Nordell Notes...

Finally some good news to report!

2012-02-08T23:20:00.002-06:00

Praise God!!!!

It's long and detailed so I'll try to give the condensed version. The cultures continue to NOT grow anything; other than a nonspecific random growth that was never able to be replicated. This bacteria was in the mycobacterial family but again, has never replicated. Therefore, the consensus of the doctors is that it was a contaminant obtained when they presented the tissue for sample, rather than a true germ from his body, that caused the one time mycobacterial growth.

There is a very slim chance that he could actually have this mycobacterial, however, at this point they don't think so. He does not have/ nor has he ever shown any other presenting symptoms of this bacteria.

The mycobacteria family is found in our everyday environment; on the skin, in water, in air, etc. It can be obtained through an open wound (including a PICC) or even inhaled. Two of the most heard of diseases in this family are TB and leprosy. He has been tested multiple times and in many ways and there is NO evidence that he has either of these diseases.

Seeing that his PICC, his blood and the removed disc all had staph in them; they believe the entire infection was/is "just" staph! YIIIPPPPEEE!

So, what happens now? He will continue on the IV Vancomycin for 6-8 weeks. They will vigilantly monitor weekly labs; specifically watching for his inflammatory markers to continue to trend down, as well as hemoglobin, white blood cells & kidney function to remain stable. An MRI will also be repeated at 3 months to look at infected areas.

Up to this point, his bloodwork over the last few weeks has looked great! There is also a specific test that measures the Vancomycin level which tells them if he is getting too little, too much or just enough and his is staying right on target. The one downside is the Vancomycin decreases his appetite.

And to catch up:

Last week was his post-op appointment with the neurosurgeon. Everything looked very good; staples were removed and use of collar was discontinued. What a relief!

One kicker is...the continued back pain from the lumbar issues. Unfortunately, infection trumps back pain. Aggressive treatment is not an option, until they are sure infection is cleared up. He has been able to do a little physical therapy--passive stretches (meaning no firing of muscles, so, he is to keep his muscles relaxed while muscle is stretched for him)--to try to relieve some of the pain.

Not so short, but it's definitely the condensed version!

Thank you for not only holding us up when times are rough, but celebrating & praising with us when times are good!

Please continue to pray for complete healing, as well as, relief of pain. Poor guy can't even sit in his recliner. Due to the amount of back pain, he must sit in a straight back chair, ugh!

Love you guys!
Christie

"Stand firm and you will see the deliverance the Lord will bring you..." Exodus 14:13 NIV

2012-01-28T22:55:00.000-06:00

I apologize for not keeping everyone updated; settling into our new routine has kept me super busy!

Ron's had good days and bad; days where he is able to get around fairly well and others where he is totally dependent on the walker. I'm so proud of him, even on the bad days, he tries to keep in mind the good he has had, instead of focusing on the pain of that day.

Tuesday, he has a follow-up with neurosurgeon and will have staples removed. He is also hoping he will be able to get rid of the collar at this time, too.

In the midst of all that's been going on, we have dismissed home health service and TPN pharmacy and are now with a company that is able to provide both services together. We are blessed to be using Digestive Health Associates of Texas. They have 5 locations which are specific infusion therapy centers, providing an RN who will do PICC dressing change as well as blood draws, all in one stop! The most beneficial part of this is that they specialize in infusion therapy and PICC care, so they are very familiar with this type of care; as opposed to home health nurse who only had 1 patient with a PICC -- Ron! Four of their 5 locations are in Dallas and then they have 1 promoted as Ft. Worth; which happens to be located in Bedford, just down the street from where Ron had to go for weekly blood draws. So excited to have all of his needs taken care of in one stop!

Please continue to pray for his tremendous back pain. There is not a lot he can do, other than take pain meds and muscle relaxant, which tends to make him pretty fuzzy-headed. And that blood cultures will reveal something conclusive, quickly would be nice.

Thank you for honoring us by standing in the gap with your continued prayers on our behalf.

Love, Christie

"I will lead them by ways they have not known, along unfamiliar paths I will guide them;
I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do; I will not forsake them."
Isaiah 42:16 NIV

Ahhh, the good life!

2012-01-22T23:09:00.001-06:00

Nothing beats: Home, recliner, newspaper, coffee...and remote!

Sorry for the delay...we've been home since Friday night and are still trying to get caught up on rest, laundry and generally settling into our newest routine.

I'll try to fill in details soon. In the meantime, please continue to pray, especially for Ron's pain to decrease and for peace of mind for me as I am at work and safety for him as he is home alone.

Thanks so much!

Beautiful day in the neighborhood!

2012-01-20T00:09:00.001-06:00

Last night's IR, though long, accomplished the task! PICC was able to be placed in right arm, praise God! It was quite complicated (go figure!), with Dr. D having to use a balloon to widen vein in order to allow PICC to travel along. Ron arrived back to his room midnight(ish) and it was after 1 before they were able to get him settled in, meds administered and TPN started.

Today, I got my first peek at the incision site on his neck as the neurosurgeon examined it and then as his nurse removed the drainage tube and taught me how to perform dressing change. It's really not that bad, a nice little row of staples. However, I must confess, it's a little daunting knowing I'm messing with an unstable neurological area since they had to remove a disc; and the fact that his esophagus is sore from being moved. YIKES! He will have staples removed 10 days post-op; and will most likely be able to get rid of the collar at that time.

Infection disease doctor reported he was surprised to find that as of today (Thursday) disc sample is growing staph, as well as the other unknown nasty bug, therfore will need to be on Vancomycin for at least 6 weeks. Whatever antibiotic is best suited to other bacteria will be added when we have specifics. This was a surprise in that staph bacteria typically show up much sooner and this one was really slow-growing.

Gallium scan came back completely clear. This was another huge surprise in that it didn't even "light up" in the area of the known infection sites. Gallium scan uses isotopes (radioactive material) to look for inflammation, infection, or cancer in the body. The isotopes will gravitate to these types of area. They were anticipating "hot spots" running along the left arm where the (infected) PICC was located; in his neck where the big infection is located and even in places where he has arthritis, as well as his lumbar region where he has the bulging disc. Absolutely nothing! So crazy!

On the whole, it was a pretty decent day! We were able to take a couple of good walks (without assistance of walker) , even went outside in the afternoon for a bit to enjoy the beautiful sunshine!

As long as he has a good night and no other issues come up; we are on target to go home tomorrow. Not really looking forward to having to learn to administer IV antibiotic, or be responsible for one more medical thing; but, oh how we've missed our home; our comfort zone!

Here's to a good night!

Love, Christie

The new update is here! The new update is here!!!

2012-01-18T23:06:00.001-06:00

I'm sure that's how you feel each time you see an update from us, right?

Some good news and some not so good news to report.

Good news: probably going home in the next couple of days! YIPPEEE!!!!

Not so good news: they still don't know the specific type of bacteria.

They do know it's not staph or it would have grown something by now. Which means it will probably be another 2-6 weeks before they get any results. They plan to take a portion of the sample - a "DNA fingerprint" and send it off to the University of Washington for specialized testing to determine the genetic makeup of the bacteria. In the meantime, he will be sent home to wait, as well as heal, from all he's undergone this week.

That being said the type of bacteria will most likely be very difficult to treat since it multiplies slowly but wreaks havoc. And it has most likely been in his system a while, smoldering. Crazy part of all of this is the fact that he hasn't had a fever, no elevated white blood count, no chills or any other typical symptoms of infection. Ah, my atypical guy!

They did find his PICC line is infected by a bacteria in the staph family, so he will be treated with IV vancomycin for 7-10 days (at home). They will then do another set of cultures to make sure it is clear. No, the "big" infection is not the same type of bug.

So, why don't they just go ahead and give him a broad spectrum antibiotic?

They have to know specifically what they’re treating - otherwise it may do more harm than good.

It's 11 PM and he's been down in IR since 8:30, due to the PICC infection. They are removing the current PICC in his left arm and placing either a new PICC, or possibly a port, depending on a viable location. We're praying for a new PICC in his right arm, however, since he had an infection in his right arm a while back and had to have a vein removed, that may not be an option. We've always been told small opening, potential for small problems; big opening, potential for big problems. And some of his PICC-related problems in the past have not seemed so small to us, so we'd love to be able to stick with a PICC.

Nuclear scan is complete and we should know results tomorrow, so I will include IR update at that point.

Good night faithful ones!

"God will allow no suffering, no trial, above what you are able to bear." I Corinthian 10:13

There is a time coming in which your glory shall consist in the very thing which now constitutes your pain. - George Matheson, Scottish theologian and preacher

Good News

2012-01-17T23:13:00.000-06:00

Happy to get some good news today! TEE (ECHO) came back showing no "vegetation" which means no infection there! Praise God!

Sugical biopsy turned into disc removal since the entire disc was infected. Neuro-surgeon said the procedure went well, he was especially happy to find it has not spread to the spinal cord. He had a rough time in recovery with pain management but finally made it back up to his room around 8PM. He has staples in his neck, is in a soft collar, has a drain tube and must stay on his back at 20 degrees. He continues to be in alot of pain so please pray this will diminish quickly.

Other than 2 more neuro scans, I believe the major stuff is over. Hopefully they will now begin to get answers as to what type of infection we're dealing with and get him started on the most effective antibiotics.

I'm sure there is more to report, but oh so tired this evening; I'll try to catch up tomorrow.

Thanks for your contined prayers!

Monday 1/16/2012

2012-01-16T23:47:00.000-06:00

So thankful for an extra day off, allowing me to be with my hubby without using up one of my days from work...each and every one of them will be much-needed whenever he comes home.

Last night's dose of Ativan helped tremendously as it pretty much knocked him out for most of the night unfortunately, the pain in his back was still there with a vengeance this morning.

TEE (specialized ECHO) was performed today; isotopes were injected to begin Gallium scan tomorrow, and physical therapy came to show Ron some things to work on to help with lower back issues and to bring him a walker...at times, spasms hit so hard it renders his legs pretty much useless, just about brings him to his knees, thus the walker to help with mobility/stability and keep him safe. Will also give me peace of mind; there were a couple of times he really scared me when the pain hit--he was going down fast and I wasn't sure I could do anything to help him.

Dr. A spoke with IR and they deferred biopsy to neuro. Neurosurgeon met with us late this afternoon and plan was put in place to perform procedure late tomorrow afternoon. They are unable to do a needle biopsy therefore Dr. W will make an incision in the front of his neck, move the esophagus out of the way and take bone and tissue samples from C6&7 along with dura from in between these vertebrae.

I know we can count on each of you to continue to pray. Specifically to petition the Father on Ron's behalf to reveal the exact bacteria we are dealing with in order to target the antibiotics to cover those.

Hope to hear results from TEE tomorrow.

Much love, Christie

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown....Do not be afraid, for I am with you." Isaiah 43:2&5 NLT

“Faith is taking the first step even when you can't see the whole staircase.”
― Martin Luther King Jr.

Sunday's update from Presby!

2012-01-15T23:51:00.002-06:00

Praise God! Yesterday's MRI of lumbar region revealed there is no infection in the lower back!!!

The muscles are locking up and spasming due to over compensation for upper back issues from infection which intensifies bulging disc (we've known he has for a while) along with some arthritis in this area.

What will be done about the tremendous lower back pain? He will be given Ativan at night which has properties of a muscle relaxant and should help him to really relax and get better sleep, too. PT has also been called in to work with him.

Tomorrow will be a very busy day. They will begin the Gallium scan series; perform the specialized ECHO (TEE) and they will be talking with the head of IR to see if he can do biopsy or if it will need to be done by a neurosurgeon. Once all of these tests/procedures are complete and cultures grow, they will know what antibiotic to use to target the specific bacteria.

Though Osteomyelitis (infection in the bone) is a serious condition, Ron's doctors feel confident it is very treatable. When asked why they are so confident, they gave several reasons: there is no involvement of the spinal cord; the results of the lumbar MRI show no indication it has traveled; he has no decline in health otherwise; and there has been no elevation in white blood count or temp.

What concerns them is how to prevent future bloodstream infections. Plans are to amp up sterile conditions of everything to be introduced through PICC, be more proactive with frequently scheduled specialized blood tests to try to catch anything that might be brewing and for us to be even more vigilant when flushing, injecting Lovenox, introducing additives to TPN and hooking up to PICC.

Please continue to pray whenever we come to mind!

Christie

"The Lord will guide you continually..." Isaih 58:11 NLT

Faith does not concern itself with the entire journey. One step is enough. That first step is all that is needed. Breathe a prayer for courage to fill your legs, as well as your heart, as you face the unknown, the unexpected....Put your hand into the hand of God. He gives the calmness and serenity of heart and soul.

Do not limit the limitless God! With Him face the new trail and follow on unafraid, for you walk not alone!

Selected entries from Streams in the Desert 2

Best medicine anyone could ever ask for!

2012-01-14T23:56:00.000-06:00

Papa had some special visitors brighten his day.

Busy day here at Presby!

2012-01-14T17:09:00.000-06:00

Ron was seen by Dr. H (infectious disease) first thing this morning, and we now have a better idea of what to expect over the next few days.

He had an MRI of his lumbar (lower back) this afternoon since he has been experiencing tremendous pain in this region the last few days as well.

Orders have been placed for a needle guided biopsy of the C6-C7 on Monday (waiting until Monday to allow Lovenox -blood thinner- to get out of his system). If they are unable to get an adequate sample to grow cultures this way, then he will have to have a neuro surgeon go in to obtain samples by taking a small piece of the bone.

Infections like this travel through the bloodstream and can also end up in the heart causing endocarditis (inflammation of the inside lining of the heart chambers and heart valves); they will do a specialized ECHO of the heart called a TEE (trans-esophageal echo cardiogram) where they go down through the esophagus to get an "inside view". Again, waiting til Monday, allowing Lovenox to get out of system.

A Gallium scan (specific type of nuclear scan) is also on the agenda. For this test, they inject him with isotopes, which focuses in on any areas of inflammation in the body. He will undergo this scan once a day for 3 days. They may possibly start this procedure today.

So, what causes an infection like this to get into the spine you ask?

Well, three of the ways to get an infection into your bloodstream is if you have a PICC line, have had an endoscopy or dental work. Check, check and check! He's had all three of these things in the last 4-6 weeks!

Ron asked the Infectious disease doc how affirmative the MRI was in showing the infection, that they weren't just seeing some little thing and assuming it was infection. His reply was that Ron's MRI was "pretty impressive - very definitive in showing infection.

He also says Ron will be on big gun IV antibiotics for 6-12 weeks and they will repeat scans in 3-6 months and again in a year to make sure everything has cleared up.

Whew....what a day! It all sounds pretty scary but everyone seems to feel confident that things are headed in the right direction. I must say, I'm especially glad to finally have some results and direction.

I know you are faithfully lifting him to the Father; know that we are so very grateful for your petitions on his behalf!

Love, Christie

"...this happened that the work of God might be displayed..." John 9:3 NIV

Beautiful weekend to spend at ... Presby?!?

2012-01-14T00:27:00.002-06:00

After a week full of doctor visits, labs, IR, x-rays, MRI and a whole lot of pain, we made our 3rd trip to Presby this evening -- this time to be admitted.

Ron's MRI yesterday revealed he has an infection in his spine, specifically the bones of C6 & C7. Not good. One of the ramifications of being on long-term TPN is the fact a PICC line is an openning to allow bacteria to slip in.

Please pray as he undergoes many more blood draws, xrays, EKG, cultures and possibly a biopsy, that they will be able to determine exactly what kind of infection, which will give them the knowledge to treat with the specific antibiotic needed. He will have to be on high-dose IV antibiotics for about 6 weeks; most likely inpatient about a week and then I'll be taught to administer his IV meds at home.

I'll try to keep you posted as more as learned.

Love, Christie

My Deliverer is coming - my Deliverer is standing by

He will never break His promise - He has written it upon the sky

My Deliverer is coming - my Deliverer is standing by

I will never doubt His promise though I doubt my heart, I doubt my eyes

-- Rich Mullins

New Year, same old story

2012-01-07T17:58:00.003-06:00

Hello, all~

We've been on an up and down roller coaster ride over the last couple weeks...some really good days; and some really bad ones which culminated in a trip to the ER.

I know things are not good when I text the hubby after work to remind him it's my exercise day so I'll be home late and he replies with a text telling me he's having some weird unexplained pain. I change plans and head straight home to assess the situation. Blood pressure was good, no temp, however, complaints of pain in left chest, shoulder, neck, arm and back set off alarms. So I suggest we make a trip to the ER which he agrees is a good idea...now that really screams RED ALERT! I grab our hospital back and other necessities and off we go to Presby.

As I'm driving I comment we're about to come to the exit for HEB, and if he's in a lot of pain we could go there instead and then, if needed, be transported to Presby; which he agrees would be a good idea! Lord, have mercy! Let me tell you, the fastest way to be seen by a doctor in an ER is to go in complaining of pain in upper left chest, shoulder, neck, back and arm!!!! He was headed to the designated trauma room before I even had a chance to park and get inside!

He was immediately hooked up for an EKG and bloodwork was drawn. EKG looked okay so they did a chest xray, which also looked fine and showed PICC continues to have good placement. Because of his complicated history, they ordered a CT to check out the arteries leading to his heart and lungs...which looked fine and labs returned as unremarkable. After 5 hours of testing and waiting, the doctor's best guess was that it is something musculoskeletal and discharged us with pain meds and instructions to come back if it gets worse.

His pain continued to remain awful, however, the discouragement was even worse. Why the continued medical issues, God; can't we just get one little break here???

He had similar issues with this sort of pain (not quite as intense) in mid-November when manufacturers decided to stop making one of the components needed to formulate TPN for his particular needs. His pH balance and other levels got all out of whack which caused his body to try to meet his nutritional needs by drawing from his muscles and joints leading to severe, random pain. So, we begin to think maybe this is all TPN related again. ER faxed labs and all other test results to doctor covering for Dr. A, who is out of town, to compare with results from his normal weekly labs which were drawn on Tuesday. Unfortunately(?), there was no marked difference to account for what's going on so we're still at a loss.

Side note here: That morning I read from my perpetual calendar "The peace of God will guard your hearts" I felt led to claim that verse for us for that day; little knowing I was praying that God would literally/physically guard Ron's heart from damage! Once again, He always goes before us!

As I was driving the next day, I passed a sign on a church that I pass every day, that read "Behold the Lamb of God, who takes away the sin of the world." (John 1:29) As I read it I thought, we typically don't think on this verse much, unless it's Christmas or Easter; those times when we are more focused on the life story of Christ. We think more on Christ's birth, John the Baptist declaring Jesus as the Son of God, we think about His arrest, trial, death, burial & resurrection. Then this quiet voice whispered, 'but what does it mean to you today?' Well, let's see - to look at; gaze upon. I was being reminded that despite this last little bump in the road, no matter what my life circumstance, I am to keep my eyes on Christ.

When I looked up the definition of behold I read:
to observe, look at, see.
synonyms: regard, gaze upon, view; watch; discern
Word origin: "give regard to, hold in view," also "to keep hold of, to belong to,"

Father, as I "behold the Lamb", may I do so with faith, as I put my hope and trust in You.

Please pray for my sweet guy. Pray pain will subside, his spirit will be encouraged and somehow, we will be able to figure out what's causing these recurring bouts of pain.

WOW...

2011-12-14T22:04:00.000-06:00

In the wee hours of the morning, 4 years ago today, we said goodbye to our wonderful team of caregivers at Harris HEB and were introduced to the incredible doctors, nurses & staff of Presbyterian Hospital. We continue to be blessed by them!

Check out our post from that day:
http://nordellnotes.blogspot.com/2007/12/transfer-update.html

Or better yet, check out all of December 2007 and be reminded of God's incredible grace!
http://nordellnotes.blogspot.com/2007_12_01_archive.html

Weekend in Tyler

2011-10-23T23:53:00.000-05:00

Fun-filled family weekend spent in Tyler celebrating the marriage of Josh & Jen! Eating, canoeing on the lake, eating, hiking, eating, playing cards, catching up with family, and did I mention eating? Thank you Green Acres Baptist Camp for the lovely accomodations; even though the lake is way down, it was still a beautiful place to hang out!

Jen, you are a wonderful new addition to our family! ♥

Four years

2011-10-09T23:51:00.001-05:00

hankful for the many doctors, PA's, nurses, techs, radiologists, transporters and all other medical personnel who have been a major part of our journey.

Special shout out to Dr. A, Presby M6West, IR & 3rd floor ICU, as well as Harris HEB ICU. Not to mention our fabulous family, friends, church family and even complete strangers who have cared for us, encouraged us, supported us financially...we are incredibly blessed.

As our journey continues, so does His faithfulness!

"This miracle will bring great honor to the Lord's name; it will be an everlasting sign of His power and love." Isaiah 55:13b

Happy Anniversary!

2011-08-01T06:39:00.001-05:00

Praising God for an early morning peaceful homegoing for Ron's 92 year old Mom. Happy 66th anniversary, Mom & Dad--what a glorious way to celebrate by being reunited in Heaven!

Mom Nordell

2011-07-31T23:47:00.002-05:00

Mom's health is declining. She is under the care of hospice 24/7 and all things seem to indicate she will not rally. She has stopped eating; refusing any food or liquid intake, as well as her medications for the last 4 days. She seems to be comfortable; sleeping peacefully pretty much around the clock.

Please pray for a peaceful, painfree homegoing.

Summertime, and the living is....

2011-07-24T21:58:00.000-05:00

EXPENSIVE!!!

Holy Cow...the last few weeks we've been shelling out money like you'd think we had it!

We've known for several years that we needed to replace our kitchen appliances, so we've been diligently trying to save for this venture. New cooktop, oven and over the range microwave were ordered last week, to be delivered on Friday. Being that our appliances are as old as our home (30+ years), we knew going in there would be some work involved in installing the new wall oven. We opted to have the oven installed by the appliance store, since it would require more work than we could handle. Wednesday night, we set to work removing the old cooktop and microwave, as well as removing all the dishes, pots and pans in the cabinets/drawers surrounding in anticipation of the work to come; with Aaron agreeing to help put the new ones in.

Removal was a breeze and the excitement was building. Ahh, finally, a cooktop that we didn't have to worry about the burners falling off while cooking; and an oven that keeps an even temperature thereby avoiding over or undercooked food; and a microwave within easy reach instead of having to be on tiptoes to reach!!!! YIPPEE!!!

Guys came out Thursday to take measurements to make sure everything would fit properly and see what all needed to be done to install the new oven. Right before they arrived, we received a call informing us that the cooktop would not be delivered until Monday and the microwave the following week! Remember, we had removed the old cooktop and microwave the night before! Rats, so much for being prepared...oh well, we could work around that.

The guys arrived Friday (different guys, actually) and they had not gotten the word as to the extent of the work needed to be done for installation. However, they had the new wall oven with them and we were excited to get things going. Until the guy says "it's gonna take alot of work to get this 30" oven to fit into this 27" oven space". OH NO!!! The wrong oven had been ordered!!!! Obviously, this was not going to work! So, off they went and call was made to make sure new oven was ordered. Supposedly, we will get the cooktop Monday, the wall oven Thursday and the above range microwave the next week.

WHEW...I'll be so glad when this is completed. Having several huge holes in my kitchen, and dishes spread out all over the house is a bummer. It's a good thing Ron doesn't eat much and I can get by without cooking for a while; we all need more fresh fruits and vegetables anyway, right? Salads, here we come!

Our next BIG Ticket item was to the dentist. We know living on TPN is not the ideal nutrition and long-term TPN has long-term ramifications; including causing problems with the teeth and gums. Add to that the consequences of frequent yakking and you're bound to have some dental issues. It had been over 4 years since either of us had been to the dentist. Two crowns and 2 fillings later; we'll be good as new! Believe it or not, other than alot of discoloration, Ron only issue was one crown; all the rest of the work is what I needed!! Go figure! BOO for no dental insurance.

The good news is....we're racking up those frequent flier miles! Before we know it, we'll be able to start dreaming of another vacation!

To catch up on our other summer happenings, check out our blog www.nordellnotes.blogspot.com . You can read about our 4th of July weekend trip to Presby, as well as our vacation to San Francisco and everything in between!

Although it's been an expensive couple of weeks, and it would be easy to give in to anxiety over our finances; we choose to trust in knowing that God would not take us someplace He will not provide for. And WE KNOW He ALWAYS provides!

More news to share soon!

Much love,
Christie

"...'Yes', says the Lord, 'I will do mighty miracles'...All the nations of the world will stand amazed at what the Lord will do." Micah 7:15-16 (selected) NLT

"You will show us Your faithfulness and unfailing love as You promised..." Micah 7:20

Back in Action

2011-07-14T21:55:00.000-05:00

Sorry we've been MIA; it's been a C-RA-ZY couple of weeks.

Most of you know about Ron's episode over 4th of July resulting in a day trip to Presby. For those who don't, long story short - Ron spiked a 103.3 temp which wouldn't budge despite meds, cool shower, ice packs, etc. We then found he had a leak in his PICC, so off to Presby we went. IR changed out his PICC, sent it out for cultures and sent us on our way. Results from cultures confirm PICC was infected. As you can imagine he felt pretty crummy for a few days.

Just when things were getting back to "normal"; I was hit by the most awful stomach bug I've ever had! Five days later, I'm just now able to begin eating something other than crackers, water and/or potatoes. Let me tell ya, this experience has given me a greater appreciaiton for how much my sweet guy suffers when he's dealing with the yakking, digestive issues, etc.....and I know what I had doesn't come near to touching what he goes through!

Anywho, on to better things! Don and Marcie's daughter, Keely, is getting married this weekend!!! We will be spending the weekend in Waco helping out with all the wedding festivities. We leave Friday and return Sunday.

And yes, even though it's not that far from home, we do have to take all our supplies and have an emergency plan in place, just in case a medical event arises!

Hottie

2011-07-02T21:47:00.001-05:00

Update on my hunka hunka burnin' love...

Small leak was found in PICC. Dr. A had contacted Dr. C at Presby's Interventional Radiology with his concerns and they agreed PICC needed to be replaced today. Dr. C called to tell us there were four other procedures ahead of him, so we were to just hang out at home and he'd call about an hour and a half before he was ready for Ron's procedure.

We are so blessed....first off, to have doctor's (not just doctor's but specialists!) who make themselves that accessible to us. Even when Dr. A is not on call (and he is not this weekend), he continues to answer my every call to his cell phone! And then to have them call us personally and tell us to stay home where Ron would be more comfortable until they were ready--WOW!

We did have to be admitted through ER but they knew we were coming and things went very smoothly. We left our house at 4. By 8:30ish we were home with temperature under control and the hubby resting in his recliner!

Best guess is bacteria got in through leak in PICC, which placed germs directly into the bloodstream; more specifically the superior vena cava. Yes, you're thinking correctly that's directly into the heart!

Thank you, Lord for watching over my hottie! And for blessing us with incredible doctors and faithful prayer warrior friends!

My hubby is so hot.....

2011-07-02T12:15:00.000-05:00

Who needs fireworks when you have a hubby as hot as mine???

How hot is he?

He's so hot it requires a trip to Presby to cool him down! 103.3 for several hours...YOWZA!!! Cool shower, ice packs, other home remedies tried with no success.

You know how we enjoy spending holidays at our home away from home!

Tommy Teague ~ beloved pastor/treasured friend

2011-06-27T00:36:00.003-05:00

Early Thursday, June 23, we received news that Tommy had unexpectedly passed from this life to eternity, on his 58th birthday while in Israel leading a group from our church on a tour of the Holy Land.

As our pastor and friend for the last 13 years, we shared in many life-changing events. Two of the three Teague children were the same age as our boys. Our Ryan and their Jonathan were both born Aug 13, 1980; while their Julie and our Aaron were best buds from 8th grade on --going off to college together and remaining close to this day.

We have vivid memories of Tommy and Rita being with us at Harris Hospital Trauma ICU as we awaited word on Aaron's condition following his tragic accident; then returning at midnight after getting the youth off to camp earlier that evening, in order to spend some time alone with us, praying over us and seeing to our needs. Their encouragement and support throughout Aaron's lengthy recovery was invaluable.

Tommy was an incredible mentor/spiritual adviser for Aaron throughout his high school and college years and especially over the last few years as life handed him some pretty hard blows. Aaron never doubted that Tommy loved him unconditionally and was only a phone call away.

Though Ryan was already headed off to college when Tommy came as our pastor; Tommy became a rock to him as well. Throughout the last few years in particular, they formed a bond as Tommy made himself available to help Ryan navigate the seas of change taking place in his life. He also provided support in joyous times by being Ryan and Stacee's premarital counselor and officiant at their wedding.

Tommy was at my side when doctor's called me in to that dreaded family conference room to inform me that, despite all their efforts, my sweet husband would not survive the trauma his body had endured over the last month. I remember many hospital visits from Tommy and Rita as they remained close at hand praying fervently that God would preserve Ron's life as, over many months, battle was waged! From that time to the present, they have been a constant source of encouragement and strength as we have learned to live in a new normal.

We had the honor of working on staff with Tommy at Children's Camp for many years and he and Rita even entrusted us with the furtherance of each of their daughters' spiritual growth as we served them in various areas of the the youth department, as well as tried to help flesh out faith together through Senior Bible Study.

Tommy loved His Lord and was passionate about sharing this love. He counted it a great joy to take groups to Israel to walk the roads Jesus had walked and I think it is so appropriate that he went to sleep after a day spent traveling these same paths and woke up in Heaven to walk the streets of Glory with Him.

We count it a great honor to have done life together...to have known and loved and to have been known and loved by this precious man! Thank you, Tommy, for your steadfast, faithful legacy of love, compassion, integrity, humility, and your unfailing passion for those things the Father is passionate about. We are but one of many who recount stories of your faithfulness to the people God entrusted to your care.

Please pray for Tommy's family: wife, Rita; daughters Julie and Joy; son, Jonathan, and wife Michelle; along with his three precious granddaughters.

We also ask you to pray for his extended family, friends and our church family. This has come as a tremendous shock to so many people. And, as you can imagine, the fact that his death took place in a foreign country has greatly complicated things causing the family to have to wade through alot of red tape in making of arrangements; compounding their grief. They are hoping his body will be home in the States on Monday allowing the funeral to take place on Thursday.

We love you, Tommy; you are already greatly missed!

10 years

2011-06-17T16:55:00.000-05:00

"I am trusting You, O Lord, saying, 'You are my God!' My future is in Your hands." Psalm 31:14-15a

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

San Francisco ~

2011-06-13T18:20:00.000-05:00

What a great vacation! Worth every minute of detailed preparation for travel with my high medical needs guy. Staying at Embassy Suites is always such a treat. Having the two rooms allows Ron to get the sleep he needs, while allowing me to be up and about in the living area without disturbing him. It also gives us the added room we need for all his medical supplies; as well as a refrigerator for TPN storage. Ron did well; a couple of rough nights and one yakking episode but otherwise well. Fortunately, though we had a lot we wanted to do, we were on no timetable, making it easy to accommodate whatever pace he needed.

Thanks to those of you who responded to my request for suggested things to do while in San Francisco; I think we did just about ALL of them!

amazing audio tour of Alcatraz

strolling the quaint streets of Sausalito

trip to Muir Woods to see the giant redwoods

watch the sea lions just off Pier 39 and browse the shops there
pedicab along Fisherman’s Wharf
several trips down Lombard (crookedest) street

Kodak moment in front of the Painted Ladies
ride the cable cars (while singing Rice-A-Roni song, of course!)
yummy splurge at Scoma’s restaurant on Fisherman’s Wharf
Sunset Cruise on the Bay featuring close-up look at Golden Gate Bridge

visit several vineyards in Napa Valley
Rubicon Estates Vineyard

But, I must say, my favorite was experiencing Pebble Beach with my hubby! A bittersweet time for him, finally seeing his dream course in person; yet not being physically able to play it. On the advice of a friend, I explained Ron’s condition to those in the Pro Shop and they graciously allowed us to rent a cart and drive the entire course! It was fabulous! Just wish it had been a clear day. Only 2 out of our 6 days did we have blue skies and sunshine. The weather was refreshingly cool; in fact it got downright cold at times! The highest temp while we were there was 60.

It was so fun to have our Mavericks playing three nights that week. It made it easy to want to end the day early enough to be back to our hotel in time for tip off, which helped keep Ron from overexerting.

The Texas heat was pretty hard on Ron when we returned and he almost immediately began showing signs of dehydration. Fortunately, we were able to catch it quickly and get fluid in TPN increased before things got bad.

Of course, coming home to these sweet faces made returning to the heat much more bearable!

Oh boy...

2011-06-09T22:47:00.000-05:00

...it's a boy!!!!!

We got the call today, as we were on the course at Pebble Beach! Evidently our "proud" little one showed off, sonogram shows 100% that it's a boy!!! Our little guy's due date is October 31 and everything is measuring as it should.

Very proud Mama and Daddy (and Grammie and Papa!). Papa was so excited, he had to buy his grandson his first golf ball while at his dream course, so sweet!

Can't wait to welcome our new little guy to the family. And Papa can't wait to introduce him to his favorite game!

"Sons are a heritage from the Lord, children a reward from Him." Psalm 127:3

Whew! Nothing like spontaniety!

2011-06-04T22:23:00.000-05:00

It's been wild and woolly around here! Don't worry, not medically; Ron's been fairly stable the last 6 weeks or so! Good thing, since end of school year is always super busy; and this year was no exception!

Between semester exams, preparing work for summer school, a great family celebration of Grandma Nordell's 92nd birthday, graduation parties, wedding showers, etc., I feel I hardly saw my hubby the last week or so of school, except when I fell into bed at night!

In the midst of the fray, our 32nd anniversary came and went...I worked late, had a doctor appt after work, our department hosted a graduation party for two of our students but finally made it home just in time to give my sweetie a kiss and wish him a happy anniversary! Woo hoo!!!

Hallelujah summer officially began for me Sunday, May 30!

The big news around here is, we are always on the look out to do something special for our anniversary, and that opportunity arrived about 10 days ago. American Airlines had been celebrating their 30 year anniversary (just babies compared to us, haha!) and were running different specials each day...I happened upon the day they were having a GREAT discount on all vacation packages using frequent flier miles.

So....we are leaving bright and early Sunday (yes, tomorrow!) morning for San Francisco! We are super, super excited! God promises to work all things together for good, and one good thing that has come out of Ron's extensive medical bills is the miles we keep earning! Our airfare, hotel and car rental have ALL been covered by miles, thus far the cost to us has been a total of $85! The rest of the trip will be financed by the unexpected escrow overage check we recently received, as well as an anonymous gift Ron found in his Bible last month...thanks anonymous; what a blessing you are!!!

This entire week has been spent making all the necessary medical arrangements needed for travel for Ron. We have names of hospitals to contact in case of emergency, along with detailed, concise medical history synopsis in case we were to need to go to hospital, as well as name and number of one of Dr. A's med school classmates in Berkley (just across the bay from where we are staying); all medical paperwork in place for airline travel and to be able to pass security and the wheelchair ready to go. We typically have TPN and daily medical supplies shipped when we travel, however our insurance no longer covers this and the cost was going to be $200 (it HAS to be kept refrigerated and weighs around 40 lbs...UGH!); therefore, we have chosen to have it checked in along with our luggage. A major hassle when we get to San Francisco, but we won't have to worry about bringing it back since all the supplies will be used up by then. Praise God, Aaron will be taking us to the airport so he'll do all the luggage and box wrangling when we check in! Thanks, Aaron!!!

We will check our e-mail daily so if you have any fun ideas of things to do....e-mail them to us!!!

We'll take things pretty easy. With the exception of our one booked excursion, we will do things that we can mostly drive around and see. Anything else we have to assure wheelchair accessibility.

The one thing we have booked is a "Jail and Sail"; 90 minute audio walking tour (well walking for me, riding in wheelchair for Ron!) of Alcatraz and then a sunset cruise of the bay.

We hope to drive down Highway 1 to Pebble Beach one day; maybe drive to Napa another day; and Muir woods and Sausalito another day. We'll play each day by ear, seeing how Ron is doing that day. We'll spend mid-morning to afternoon doing the tourist thing and then spend our evenings back at the hotel chillin'. Of course Sunday, Tuesday and Thursday evenings will be spent cheering on our Mavericks!

Please pray for safe travel, as well as a medically uneventful vacation. We could really use a low-stress time of refreshment! It's always a huge step out of my comfort zone to be so far away from our fabulous doctors, hospital and our support group. But I also know how important it is that we put our trust in God, not man. He is with us wherever we are, not just here. And He will supply whatever needs we may have, even in California!!! I have to choose to "be anxious for nothing". It's also imperative that Ron have some semblance of "normal" enjoyment of life and things to look forward to. But I tell ya, it's hard to step out in faith sometimes...even when it's to do fun things!!!

Look forward to sharing great things with you from our visit to Northern California. Will think of you often as we enjoy highs of 60 each day!

Where the rubber meets the road...

2011-04-21T19:16:00.001-05:00

After much prayer, discussion, consultation, agony, and many other emotions we have come to realize it is time to shut down Nordell Equipment Service Co. (NESCO). We have actively been trying to sell the company for the past couple of years to no success. We have had three promising possibilities, but unfortunately all have fallen through. The business has had a major decline over the past eighteen months and the value of the company, on paper, does not look attractive enough to have a serious buyer. Larry, my employee, decided to leave this past January. The calls that have been coming in since that time have been diverted to other companies so there has been no income to pay bills, except for the existing outstanding accounts. These are now exhausted for the most part.

Financially, the business is in good order as far as vendors and day to day expenses are concerned. However, in 2006 we took out a rather large SBA loan in the anticipation of expanding the business. At the time, this seemed to be the direction God was leading. Little did we know that a year later we would have our world change drastically with my illness. We are trying to make the right decisions based on God's direction on how to handle this situation. Bankruptcy appears to be our best, and possibly the only, option at this point since the business has not sold. Unfortunately, because of SBA laws requiring personal guarantees, this means not only filing bankruptcy for the busines, but personal bankruptcy as well.

The hardest part of all of this is the fact that we are holding our own in the personal finance area. It's a stretch, but God is faithful and always provides for our every need. All of our credit cards are paid off so the only outstanding debt we have is past and present (and most likely future) medical bills, along with our home mortgage. Though we have lived in our home for 25+ years, we have had to refinance on a couple of occassions.

We ask for your prayers as we seek His wisdom; yearning to hear His voice on what to do next.
I read in my bible today that trials will either turn you away from God or cause you to grow closer to Him. We choose to adhere to the latter and are trusting that this is NOT a negative but will become a positive as tomorrow brings a new beginning to something greater than we can imagine or hope for. I only wish the process was not so darn hard.

We realize this is alot of very personal information; and opening up in this intimate of a way is extremely difficult. However, we've felt from the beginning God has called us to be completely transparent in all things. We expected that in this stage of life we'd be doting on our grandkids (which we do!) and looking forward to future retirement...yet once again we're reminded that God's ways are not our ways.

Please don't hesitate to say what's on your mind; your thoughts and ideas are cherished and appreciated and will help us in making these difficult decisions.

With much love,
Ron

The best laid plans of mice and men...

2011-04-08T22:43:00.000-05:00

Oh, how we appreciate the persistent advocacy of Ron's doctors, as well as their willingness to think outside the box.

Just a couple of days after j-tube procedure, Ron hit a bit of a snafu. Due to the presence of the j-tube within the g-tube, g-tube is now narrowed, causing the risk of clogging to go up significantly. And clogged g-tube leads to yakking. And so the vicious cycle begins...again.

Three time daily water feeding through j-tube was going well; however, he was never able to advance to nutritional feed because of the recurrence of yakking due to clogged tube. After a couple of weeks of this daily (and sometimes twice daily) yakking, we realized it was time to take a step back and reassess.

The original plan was to try to place g-tube for drainage and venting purposes in order to allow relief from reflux and yakking. Somewhere along the line it seems focus shifted from g-tube for decompression to j-tube for feeding. We were definitely not opposed to j-tube feeding; however, it became apparent we need to get back to priority of finding solution to yakking issue.

With the daily yakking came sleepless nights due to severe reflux, gagging, etc.; and so the slippery slope of regression begins. He wouldn't mind having the added benefit of feedings through j-tube but, again, relief from reflux and yakking enabling him to get some sleep needs to be the priority.

So where does that leave us now?

Options:
1. Remove J-tube
2. Retain J-tube within G-tube and attempt to add another G-tube strictly for decompression/drainage
3. Keep current G-tube for decompression/drainage but consider another J-tube (to be placed surgically) for feeding tube

Option 1 seemed to be the way to go for now. Get back to the basics...get the yakking under control. Therefore, as of Wednesday, the hubby is now j-tube-less!

When he went in to IR (early!) Wednesday morning, Dr. D told him "this is going to hurt me alot more than it hurts you!" I'm sure this is true for each of his doctors with all the time, research and mental anguish they've spent in coming up with a viable option and then several attempts to make it work. It's frustrating for everyone that despite their best efforts to make things better; things just didn't pan out.

So, we'll take a step back, take a deep breath; and remember "For My thoughts are not your thoughts. Neither are your ways My ways," declares the Lord. "For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts." Isaiah 55:8

Here's to days (and nights) free of yakking! Day three of no yakking, thus far!

Love, Christie

Spring Break Events

2011-03-20T00:15:00.000-05:00

It's been a busy, busy week with rounds two and three of our Spring Break Presby-palooza on Monday and Wednesday respectively.

Monday's study revealed Ron's duodenum (first section of intestine just past stomach) collapses into itself when he's lying flat on his back, keeping things from passing from the stomach into his intestines. It will then periodically "burst open" releasing everything. Thus, one of the reasons insertion of j-tube was unsuccessful Friday. This is also a HUGE contributor to his nightly reflux.

Dr. D also said study showed he still had quite a bit of dye in his system from Friday's procedure and encouraged him to drink alot of water over the next couple of days to help flush out. Unfortunately, Wednesday's procedure also involved introducing more dye.

The high amounts of dye he was subjected to over a five day period really did a number on his system, thereby causing a need to stay close to home the remainder of the week; while also heightening the possibility of dehydration. Hopefully, by Monday it should all be behind him (sorry, just couldn't help myself!)

Wednesday's procedure was a success! Dr. D was confident it would go smoothly after having had a bird's eye view of how his digestive system works and said it would take 20-30 minutes...at most an hour. I was getting a little concerned once we reached the 2 hour mark and he was still in; then again, I should have expected it with my unique guy. . The j-tube insertion from stomach to duodenum did go smoothly; weaving his way through the rest of the duodenum and jejunum to get past the functionally blocked section was quite a challenge, since his does not take the normal path. The longest j-tube they have was b-a-r-e-l-y long enough to reach the area needed.

Recovery was a breeze, since he was awake throughout the entire procedure, and we were home by early afternoon. We're hoping for another added benefit - now that the j-tube is in place, it should help to keep the duodenum open (as opposed to collapsing into itself when he's sleeping), thus keeping the reflux at bay.

What now?

He is to inject 12 oz of water 3 times a day via j-tube for the next week to see how his body intestines tolerate. He is also to keep oral intake of food to a minimum since the j-tube is threaded through the g-tube (a tube within a tube); the g-tube will be more likely to clog thereby causing yakking. So far things are going ok. The tube feed (water) causes some cramping; he's had a couple of yakking episodes and one episode of tubing coming apart (that was a lovely mess to start St. Patrick's Day...what a way to go green!)

We are so very thankful both of these procedures were able to be performed as outpatient. Nothing beats sleeping in your own bed at night; and napping in your own recliner during the day!

We kept things pretty low-key the rest of the week, with the highlight of Spring Break being keeping our girls while both mommy and daddy worked Friday.

One of my favorite things I look forward to over Spring Break is planting flowers. With everything else going on, as well as finances being as they are, I didn't think I'd have the opportunity. However, we were blessed with an unexpected financial gift by some sweet friends which allowed us to pick up some flowers, potting soil and mulch today. I've been one dirty, sweaty, happy camper as I've pulled out the old, dead stuff and planted beautiful, blooming hibiscus, Mexican heather, alyssum and a few others. Tomorrow afternoon, I plan to weed my rose bed and spread mulch, yippee!!!

There's just something therapeutic about working in the soil. As we were making our selections; I was thinking how many analogies there are in the Bible making comparisons of our lives/hearts to plants/planting/soil:

"I am the true vine, and my Father is the gardener. He cuts off every branch in Me that bears no fruit; while very branch that does bear fruit He prunes so that it will be even more fruitful." John 15:1

"I am the vine, you are the branches. If a man remains in Me and I in him he will bear much fruit; apart from Me you can do nothing." John 15:5

The parable of the four soils: Luke 8:5-15 (selected):

"A farmer went out to sow his seeds. (The seed is the word of God) As he was scattering the seed, some fell along the path (the ones who hear and then the devil comes and takes away the word from their hearts, so that they may not believe and be saved)....Some fell on rock (those who receive the word with joy when they hear it, but they have no root...in the time of testing they fall away). Other seed fell among thorns (those who hear, but as they go on their way they are choked by life's worries, riches and pleasures, and they do not mature. Still other seed fell on good soil (those...who hear the word, retain it, and by persevering produce a crop).

John 12:24
"I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds. The man who loves his life will lose it, while the man who hates his life in this world will keep it for eternal life."

1 Peter 1:23-24
"You have been born again, not of perishable seed, but of imperishable, through the living and enduring word of God. For, all men are like grass and all their glory is like the flowers of the field; the grass withers and the flowers fall, but the word of the Lord stands forever"

Thank you, Father, for speaking in ways that I may understand, and retain (some of the time!).

Happy Spring!
Christie

Going Deeper

2011-03-13T22:05:00.001-05:00

Thanks everyone for your sweet words of encouragement and care!

Ron was in quite a bit of pain for the first 24 hours, but is doing much better today and actually felt up to eating a little.

I know my last email caused some concern, but I want to assure you we are doing well emotionally and spiritually; evidence you've been praying and God has been answering!

We'll be off again bright and early to Presbyterian for swallow study tomorrow. Please pray things go smoothly and it provides definitive direction.

You are much appreciated and loved!

Christie

God may allow our hearts to be broken so He can get deeper into them.

"For though He wounds, He binds and heals again. He will deliver you again and again, so that no evil can touch you." Job 5:18 & 19 The Living Bible

I Still Believe

2011-03-12T23:16:00.003-06:00

Friday proved to be a l-o-n-g day at Presby. We had to arrive by 8, however procedure didn't get started until 11:30. Dr. D said it would take about 2 hours to replace the PICC, super-size the G-tube and get J-tube inserted and threaded down to optimal area of intestines.

2 hours passed; then 3 and then 4...and I'm trolling the vending machines for some powdered-sugar donuts; my go to food when I'm feeling anxious at Presby. Fortunately/unfortunately, there were none to be found.

Finally, I'm told he's finished and has been taken to recovery. A few minutes later Dr. D comes out to talk with me. He was disappointed to report that he was unable to place the J-tube. He was able to get it into the stomach, however when trying to thread j-tube out of stomach, down the intestines, he kept running into dead ends. He finally gave up at the 4 hour mark.

Ron spent a little time in recovery and was then sent back up to his room in the outpatient unit with plans to be discharged; which he was after a couple of hours of observation, instructions for nothing by mouth for the next 24 hours and a lollipop for the ride home (love those lolli's!).

So, what now?

It's well known that my hubby's anatomy is quite unique due to the numerous surgeries, procedures and complications he's experienced. His intestines are not in the same position as most of us; nor does it follow the normal back and forth loopy pattern. He has many sharp turns and angles, add in all the tethering and it becomes a twisty, turny roller coaster. Dr. D feels when Ron is lying flat on his back his intestines lay over on themselves; which would contribute to the severe reflux he experiences.

Plan is to do a swallow study on Monday morning (at Presby, of course). This will give them a better idea of the path to take. They will then try again to insert the j-tube on Wednesday.

It was a very quiet car ride home. We were both disappointed, discouraged and felt totally beaten down. And, I confess, I wanted to stomp my feet, throw a little hissy fit and scream "REALLY, God? Can't we catch one little break????"

I want to be able to pray "Your will be done" and mean it; but there are times when we just want things to be less complicated and go according to the plans we've made.

But, God....

I could stop right there; that's all I should need to remember...but, God!

Now there's nothing wrong with wanting something; praying for something to go a certain way. Jesus didn't necessarily want to wait so long to go to His friend, Lazarus, before He died. And Lazarus's sisters prayed for God to heal their brother. But God had a different plan in mind. One that went far beyond healing Lazarus's sickness. (John 11:1-45) The key is whether we are willing to give up what we want and submit to His plan. To be able to pray "Your will be done" and really mean it!

No, He doesn't work according to what I want. But, He always works according to His eternal plan. And that plan, my friend, is P-E-R-F-E-C-T!

Please continue to keep my sweet guy in your prayers.

Much love,
Christie

As we were traveling home, this song came on and I felt it really spoke to our hearts. Yes,
believing is a choice.

Enjoy video link below.

I Still Believe - Jeremy Camp
http://www.youtube.com/watch?v=R4qPceadBMU

Scattered words and empty thoughts
seem to pour from my heart
I've never felt so torn before
seems I don't know where to start
but it's now that I feel Your grace falls like rain
from every fingertip, washing away my pain

'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe

Though the questions still fog up my mind
with promises I still seem to bear
even when answers slowly unwind
it's my heart I see You prepare
but its now that I feel Your grace fall like rain
from every finger tip, washing away my pain

Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe

The only place I can go is into your arms
where I throw to you my feeble prayers
in brokenness I can see that this was your will for me
Help me to know You are near

'Cause I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe

'Cause I still believe
Well I still believe
I still believe
I still believe

Spring Break...Let the Fun Begin!!!

2011-03-10T22:02:00.000-06:00

Ahhhhh....! I'm actually getting a head start on Spring Break by taking off tomorrow. Though it might make you jealous, I couldn't wait to share where I'm spending SB '11. Bright and early tomorrow morning, my sweetheart and I are headed out to ....Presbyterian!!!! Woohoo!!! What better way to spend a school break than with our friends at Presby??

Ron will have several procedures performed tomorrow and I'm so thankful I won't have to worry about missing any work next week as I tend to my guy.

Although the G-tube has been successful in keeping him from yakking, he's still unable to eat much without the tube getting clogged, so Dr. D will place a new, larger g-tube in the same location in hopes of alleviating this issue.

Dr. D willl also insert a new PICC line. Ron is having problems with his current PICC line -- one of the lines will not flush and the other has become very difficult to flush as well..not a good thing when your nutrition is dependent on IV access.

And last, but not least, he will be getting a J-tube (J- jejunal - which refers to a specific portion of your intestines). They will actually place a double lumen at the g-tube site. One of the tubes will be to drain the stomach; the other tube will be threaded down his intestines in order to give direct feeds. The intestines only receive nourishment from that which directly passes through them, unlike the rest of the body which can receive nourishment through artificial IV nutrition (TPN).

The goal is to get the bowel fed directly by placing the J-tube and hooking up liquid feeds directly to the intestines in order to get it "beefed up". Hopefully, as the lower portion gets "exercised" by this type of feeding, and that area becomes healthy, it will have a ripple effect with the upper portion of the intestines eventually getting healthier, as well.

Ron has a large section of bowel that is "functionally" blocked. It is not physically blocked, however, due to all the scar tissue, as well as nerve damage in that area, it acts as if there is a physical blockage. Dr. D will attempt to thread the J-tube down past this area to have the greatest chance of success.

He will continue to be hooked up to TPN at night and now add in the J-tube feed. He also has the option to take in food orally but is not dependent on oral foods being absorbed.

We are so very thankful for Dr. D, Dr. A and Dr. S. Their tenacity and persistance knows no bounds. They are always researching ways to get Ron healthier in order to ensure the best quality of life possible.

Enjoy your Spring Break. If we come to mind; please say a prayer on our behalf!

Much love,
Christie

"When you pass through the waters...they will not sweep over you." Isaiah 43:2

God does not open paths for us before we come to them, or provide help before help is needed. Yet when we are at our point of need, God's hand is outstretched.
J.R.M (not sure who this is, but love the quote!) Streams in the Desert

Your Will Be Done

2011-02-27T22:27:00.001-06:00

We get so wrapped up in what's going on in the ups and downs of our own life that sometimes it seems we need a kick in the pants to to get our focus back where it belongs.

Though we don't make it to church often, we are always so blessed when we do. This morning's sermon "The Most Difficult Prayer We Will Ever Pray" really spoke to both of us..

Matthew 6:9-13 is commonly referred to as "The Lord's Prayer". Luke 11 references this passage as well and also records that the disciples wanted Jesus to teach them to pray just as John the Baptist taught his disciples to pray. Jesus responded, "This, then, is how you should pray:"

"Our Father in heaven,
Hallowed be Your name.
Your Kingdom come,
Your will be done,
On earth as it is in heaven
Give us today our daily bread.
And forgive us our debts,
As we also have forgiven our debtors.
And lead us not into temptation,
But deliver us from the evil one.
For Yours is the kingdom,
And the power and the glory forever.
Amen."
(New International Version)

The main focus of PT's sermon was in verse 10 "Your will be done". If we truly mean it when we pray "Your will be done" we're committing to take our hands off and allow Him to have free reign. The key is giving up control!

Ouch!! Anyone else feel their toes just got trampled all over?

That "c" word ranks right up there with the all too familiar "p" word (pride). In reality, control is only an illusion; and pride...well, you know the Proverb "pride goes before destruction". The crux of the matter is, Satan tries to fool us into thinking we know best, and then we begin to believe the lie that what we want is better than what God wants for us.

Many (most?) of our prayers are based around a desire for God to change our circumstances to our liking. "You know, God, I've got this handled. Everything's all lined out, ready to fall into place. If you would just take care of this one little circumstance and bless this plan, I'll take it from there". However, God's more interested in changing our hearts.....the way we relate to our circumstances; not necessarily changing the cirsumstance itself.

This kind of prayer demands total dependence and absolute trust! Yet, when we choose His path, we can pray "Your will be done" without reservation! The truth is, when we have an abiding, intimate relationship with God, He will change our desires to be in line with His desires for us.

It's not about us--what we want--it's about following His will and giving Him glory. Not always an easy task. Jesus knew this first hand; He faced tremendous pain and suffering in His obedience. He was confident in His commitment to do whatever was His Father's will!

In John 6:38 Jesus said: "For I have come down from heaven to do the will of God who sent me, not to do what I want."

Yes, God's will is sometimes hard to understand. It can be costly and often brings pain and suffering...but are you willing to consider the cost of living outside of His will?

"How can we understand the road we travel? It is the Lord who directs our steps." Proverbs 20:24

Thanks, PT! Needed the reminder that it's not about our circumstances being changed (tho we'd really like that!) but all about allowing Him to mold our hearts through the circumstances.

February musings

2011-02-10T23:56:00.003-06:00

We've been home from our last little stay at Presby for two weeks now and it's certainly been busy. I'm so thankful God blessed us with an extended break due to last week's winter weather and another unexpected day off Wednesday....the downtime has been much needed!

You'd think with all this extra time off; I'd do something productive; but to be honest...despite being off of work 4 days last week, and 1 this week; I'm still behind in my reading of my one-year chronological Bible and it's taken me two weeks to catch everyone up on what's going on around here.

However, we did spend a glorious weekend playing with our precious girls...who, by the way, are both now walking! That sweet little Frankenstein walk...both arms out, slow, stiff-legged, hilarious! They "talk", giggle and play together and also enjoy reading books, and have begun to imitate animal sounds as well as kisses. But my favorite is to see how they seem to truly love each other and can be so sweet to one another. I may be a little biased, but they are just the cutest baby girls!!! Most definitely double the blessing!

Sorry, got off on a rabbit trail; on to the news you really want to know:

We knew this latest procedure would not be a cure-all, but Ron was quite disappointed to wake up yakking the first morning home. However, I fear I'm to blame. Being the fabulous wife I am, (wink, wink), I decided to prepare a healthy, nutritious meal of salmon, pasta, steamed veggies , fresh cherries, and as an added treat, I stopped by Sprinkles to pick up his favorite--German Chocolate cupcake. Seems we were both so excited about this step forward, we forgot the first cardinal rule of someone with digestive issues...stick to easily digestible foods! No seeds, nuts, skins; etc. We found out the hard way that the g-tube is easily clogged, which, you guessed it, forces everything to come back up!

So, we've had to make several adjustments in eating habits. It's been a struggle but I'm happy to report, he has only yakked one other time...which had nothing to do with the g-tube/digestive issues!

We did have to make a little trip to Presby over the weekend...drain bag busted...quite a joy to wake up to...and since they had to construct apparatus specific to his unique needs; we had to make a trip in so they could reconstruct another. We were keeping the girls for the weekend so they were along for the ride. As soon as we entered the hospital we had to get a picture of them. You know you've been around a hospital too long when the first thing you do is take a picture to commemorate your grandbabies first trip there!

Sunday afternoon, Ron suddenly felt he'd been hit by a truck...more lethargic than usual, no appetite, stiff neck, body aches, joint pains and a monster headache. Anytime something comes on that suddenly, everyone worries that it might be an infection in his PICC; and being that it goes directly to his heart, well, you get the picture.

By Monday afternoon, he was running a fever. Per Dr. A's orders, off we went to have bloodwork and cultures run. Temp continued to climb all day so decision was made to go to the after-hours clinic for a full assessment. After being poked, prodded and having that nasty flu swab done, along with a sudden, random yakking episode; praise God, he tested negative for the flu. Clinic doctor said it looked to be a virus that should run it's course within about 5 days, however he would feel worse before he felt better...yippee! True to course, that night was a rough one with temp getting up to 102.3.

We found out Wednesday morning that the lab lost his blood vials and needed him to go back for another set of blood draws and cultures. Yes, this was the day schools were closed due to ice, snow and cold. We waited until afternoon when the roads had cleared up before we ventured out.

It's so good to see him finally feeling better - no fever in over 24 hours, good sleep the last couple of nights and he finally feels like eating a little.

I think I've covered just about everything now...hope you feel in the loop!

Much love,

Christie

Though I'm behind in my readings, God continues to speak to me in many ways. Exodus 10:2 (NLT) has been a sweet reminder of God's perfect plan regardless of what we're going through.

"You will be able to tell wonderful stories to your children and grandchildren about the marvelous things I am doing...to prove that I am the Lord"

along with Job 26:14 NLT

"These are just the beginning of all that He does, merely a whisper of His power"

When life gets complicated and you've dealt with difficult circumstances for an extended period of time you can easily feel abandoned. I'm so thankful we can rest in KNOWING God has promised to NEVER leave or forsake us! Even when we hurt so badly our disappointments cause us to doubt His plan and we turn from Him, He is ALWAYS there...loving us, washing us with His peace and grace. However, we have to CHOOSE to trust, CHOOSE to believe, CHOOSE to praise, CHOOSE to follow Him...no matter where the path takes us.

This great song by Heather Williams says it so well:

Hallelujah

http://www.youtube.com/watch?v=Ufof-XgwhOs

Jesus, please come
please come today
hear me
heal me
be near me I pray

I have fallen so far
flat on my face
I'm in need of your grace today
I stumble and fall
but in spite of it all
your love always stays the same
Hallelujah
Hallelujah

Jesus, please come
please come today
break me
mold me
use me I pray

but don't give up on me now
I'm so close to you now
I'm in need of your grace today
wipe the dirt off my face
hold me in your embrace
your love always saves the day
Hallelujah
Hallelujah

I have fallen so far
flat on my face
I'm in need of your grace today
Hallelujah
Hallelujah

Sing Hallelujah
Sing Hallelujah
Sing Hallelujah amen

On my knees here I fall
in spite of it all
Hallelujah
And though it seems hard
I'm still trusting you Lord
Hallelujah
Hallelujah

Gimme a G!

2011-01-26T16:07:00.001-06:00

Procedure went well; 3+ hours of workin' on my guy but they were able to accomplish what they set out to do--G-tube is in place!

"In place" is a relative term for my unique guys anatomy. The only place they could access without piercing any loop of intestine was the tip end of his stomach; which in his case resides smack dab in the middle of his belly just barely below the sternum, a little off kilter from the rest of us due to extensive surgeries, scar tissue, etc.

Dr. D had to "get out the chisel and chisel away at scar tissue" in order to make this a viable option. As you can imagine, he's been one sore pup! Due to the extent of the procedure they opted to keep him overnight for observation and pain management.

Despite the fact he was off his blood thinner for 10 days prior, he has also developed a hematoma. Praise God it is not in the belly, but in his arm where they drew blood. A big ol' visibly raised hematoma...crazy! But if he's going to develop a hematoma, we'd prefer it be there! Blood thinner will not be resumed until hematoma has resolved.

Unfortunately, he's also suffering from a very sore throat from being intubated; and as a result of the heavy duty sedatives and pain meds, he had to be catheterized this morning to get some relief. He's feeling quite a bit better this afternoon; he's even gone for a couple walks around the floor and is now able to stay on top of the pain with oral meds as opposed to the Morphine pump. He's still hoping to go home today; however, it will all depend on (pardon the pun) whether or not he can "go" without the catheter.

Thank you for your continued prayers; evidenced by the peace we've experienced over the last couple of days.

Upcoming procedure

2011-01-23T23:36:00.003-06:00

Just to let you know, Ron's procedure has been scheduled for Tuesday, Jan 25. Since Dr. D's first day back is Monday; he and Dr. A wanted to be able to meet to discuss Ron and come up with a game plan before tackling things on Tuesday. Dr. A also met with Dr. S to get his input (since he knows Ron's anatomy inside and out). All three doctors will be in hospital on Tuesday "just in case".

It's nice to hear they are being proactive in having everyone available if an issue arises; however, I confess it kind of FREAKS ME OUT that what is typically a simple procedure requires so much planning and foresight; and that the thought even arises that there could be complications.

I think things became more of a concern after his non-procedure last week; he developed a hematoma in his belly which put him out of commission for several days. Thankfully, it resolved on it's own with no intervention required (other than what we could do at home).

On another note, our sweet Ella and Mila were just about over their colds then it kicked back in with that awful cough, nasty noses and sleepless nights. On top of that, this weekend they also came down with a stomach bug. Mommy & Daddy say that despite continued yakking, they've been fairly happy little troopers.

Please pray:

for Dr. D as he prepares for and performs Tuesday's procedure, as well as Dr. A and Dr. S as they are on standby
for Ron-- he's been off blood thinner for 10 days in preparation and was also put on a clear liquid diet for 48 hours prior.
for the procedure to go smoothly
that success will provide Ron relief; including some much-needed, uninterrupted sleep!

We were told to come prepared to be admitted, but we're hoping that things will go so well this won't be necessary!

Choosing to "be anxious for nothing..."

Christie

"True wisdom and power are with God; counsel and understanding are His." Job 12:13 NLT

"You will have courage because you will have hope; you will be protected and will rest in safety. You will lie down unafraid...." Job 11:18-19 NLT

update from today's procedure

2011-01-13T23:29:00.000-06:00

Actually, I should have titled this "Update from today's NON-procedure". The day didn't go as everyone had hoped. Although we knew going into it this was a possibility, it was still disappointing.

The scope revealed there was too much scar tissue for Dr. A to see a viable spot to place the gastric tube (also known as PEG, feeding tube, and/or g-tube). Due to Ron's past extensive surgeries, things are all out of place in his belly, therefore extreme caution must be taken to ensure tube doesn't inadvertently go through an area of the intestines. The scope also revealed his esophagus looks worse than his last scope and he had a liter of fluid in his stomach. Upon suctioning this fluid out, the intestines dumped a stomach-full back in--not the way things should work.

So, where do we go from here? The results affirm g-tube is the direction to go...since his esophagus and digestive system do not function properly, it's imperative to have a way to empty the stomach in order to prevent yakking thus causing further damage. Though not the first choice, we now go to Plan B, which is Interventional Radiology. Dr. A and Dr. D (head of IR; who knows Ron's anatomy extensively) have been in consultation as to the best way to go about this. Unfortunately, they will not be able to do anything until the week of Jan 24. They will need to use CT machine (which was not functioning today) and since it will be "a complex, difficult procedure", consensus between the IR doctors was that they feel most comfortable/confident with Dr. D performing. Unfortunately, Dr. D is on vacation until the 24th.

The plan is Dr. D, with the use of ongoing CT and X-ray, will attempt to insert the PEG. We have been in consultation with his nurse who has told us she felt sure they would not want to do this as an outpatient due to the complexity, so to bring a packed bag and be prepared to stay.

Please continue to pray. Today's procedure was painful. All the poking, prodding and being stuck with needles in several areas in hopes of finding a spot to place tube into the stomach, has left Ron needing pain meds and ice packs to help with soreness and swelling.

Even though we feel we've been kicked in the stomach; we refuse to lose hope! Though sometimes it's more difficult than others, and I confess, times we want to shout "ENOUGH!"; we choose to trust God has a perfect plan AND time.

I'd love to leave you with some words of wisdom...but, honestly, tonight I'm spent. So, I'll simply say, goodnight.

Christie

AWOL

2011-01-01T00:46:00.001-06:00

Sorry we've been AWOL...busy times around here.

We've spent the last two weeks trekking back and forth to Dallas for numerous appointments, tests and procedures.

Tuesday, Dec 21, we were at UT Southwestern for annual CTA and appointment with neurosurgeon. I'm happy to report the brain aneurysm has had no change since last year, therefore, nothing to be done until this time next year. Yippee!

Wednesday, Dec 22 we were at Presbyterian for appointment with Dr A (gastroenterologist) to go over results from Esophageal Motility Study. Sad to report study shows Ron has NO motility past swallow; which means his esophagus is not functioning at all. The belief is this has been caused by all the damage from his excessive, prolonged yakking. We're at a point where his only option is to have a PEG tube placed. A PEG (percutaneous endoscope gastrostomy) tube rests in the stomach and exits through the skin of the abdomen.

This procedure will be performed Thursday, January 13 at Presbyterian. Dr. A will use an endoscope to go down Ron's throat to his stomach. When the correct spot in his stomach is reached; Dr. A will be able to see the spot due to a very bright light on the end of the scope which will show through the stomach. He will then make an incision in which to insert the tube through the skin and the stomach wall, directly into the stomach

Most of the time when you talk about having a PEG, it's for feeding purposes. Not so in Ron's case. He will continue on TPN and will also be able to take things orally. The PEG will allow him to "vent" the stomach in order to prevent yakking. He will attach the tube to a bag at night and can vent it at other times throughout the day as needed. This is not a permanent situation. The hope is, once the yakking stops, the esophagus will heal and eventually regain motility. Once this happens, he will eventually have the PEG removed.

He was really bummed about this at first. The only experiences he has had with a PEG were when he was unable to eat at all and previous to that was the awful fiasco with Aaron's feeding tube. So, in his mind; this was not a positive step. He was thinking he would no longer be able to take anything by mouth and would have to be fed through the PEG. After extensive talking with Dr. A and then having a couple of days to mull things over, he's feeling much better about it. We were told in the "typical" person; it takes about 8-12 weeks for the esophagus to heal; but would most likely be quite a bit longer for Ron considering the amount of damage in his esophagus. Dr. A will also be very cautious as to when to remove the PEG to ensure best outcome.

Wednesday, Dec 29 we received word Tuesday's labs showed a huge jump in his white count indicating infection. So we headed to Presby to be worked in to Interventional Radiology for PICC replacement. It wouldn't be Christmas without a "visit" to our friends, now would it? Thankfully, we were in and out in about 4 hours! And yes, it was good to visit with our friendly IR staff in their new digs...which I feel BCBS has probably financed on our behalf!

Speaking of which, we were thrilled to read in last weeks newspaper that Blue Cross Blue Shield had reached an agreement with Texas Health Resources! Now, if they would quickly reach an agreement with Digestive Health Associates of Texas; we'd really be happy campers.

Thursday, Dec 30 Ron had an appointment with his primary care physician to try to get some relief from these awful headaches. Unfortunately, though prescription was written, by the time pharmacy could get around to it, insurance company refused to fill until they could get more info from the doctor and their office was already closed and will be until Monday!

Poor guy, it was a really rough morning which also led into the afternoon. He finally ended up insisting on using a lollipop...which we save for emergency purposes. UGH!

In the midst of it all, we were able to get away and enjoy 4 days with the Nordell clan for our biennial Christmas reunion. This year we chose to stay local so we could spend as much time as possible with Grandma Nordell. Therefore, 31 out of our 41 family members descended upon the Embassy Suites Downtown Ft Worth. Though Ron was definitely not feeling his best, he was a real trooper. We always have a relaxing (though not necessarily restful!) time when we're together and this was no exception. Lots of family, food, game playing, swimming and just hanging out.

Ryan, Stacee and the girls made a last minute trip to Florida after receiving news that her grandpa was in the end stages of congestive heart failure. They were able to have a great Christmas with him. We're so thankful they made the decision to go. He passed away 2 days after Christmas and I know it was so meaningful to all of them to have this time together. Please keep Stacee, her mom (Diana) and all the Dimeglio family in your prayers. It's been a very difficult few months with Grandpa's death Monday, as well as the passing of Jack (Stacee's step-dad/Diana's husband) in October.

I think that's all the news from here. Please continue to pray for Ron, especially as he deals with these awful headaches and as we look toward Jan 13 and the next phase of this journey. I must confess, I'm a little anxious since our fabulous Dr. A is out of the country for the next 10 days...he's become our safety net that I'm sure we rely on way too much. This is also why his procedure will not take place until the 13th; we didn't want to do it right before he left and definitely wanted him to be the doctor to perform since he knows Ron's "guts" so well.

Though it may sound pretty gloom and doom; we're really doing fairly well. Yes, there are times, it seems overwhelming, yet when we purpose to keep our focus steady on Christ; we're renewed in knowing that whatever He calls us to, He'll provide the way.

We hope you have had a blessed Christmas and wish you a very Happy New Year!

Much love,
Christie & Ron

"Let us hold firmly to the faith we profess" Hebrews 4:14

Yippee! An update!!!

2010-12-05T22:51:00.002-06:00

Good news!!! December 4, Ron passed the 1 year mark...1 year since he has had an inpatient hospital stay! Heartfelt thanks go to Dr. A's wonderful care as he worked with us in so many ways to make this possible. Yes, he has had multiple outpatient procedures and has many ongoing issues, but no inpatient stays~Hallelujah!

God continues to stretch us and grow us in so many ways. Asking us to trust Him even when (or maybe especially when) He calls us to step out of our comfort zone.

So what's been going on? Ron's dehydration has gotten much better and he's been off of the IV boluses for 10 days now. He has not had the dizzy, light-headed feeling for about a week. Being off of his newest medication has helped in this regard, however, he has been much more tired, a little more quiet/introspective and sleeping quite a bit; some of the reasons he had been started on that medication to begin with. Unfortunately, his kidney function has ooched up again this week so they are working on tweaking the different levels of chloride, etc in his TPN to see if they can get things back in balance. He will continue to have labs drawn weekly to keep a close eye on things. Being on long-term TPN is always a delicate balancing act.

He continues to yak pretty much daily and often twice a day. Plans are in the works to have a motility study done, hopefully before the end of the year but they aren't sure if they want to do anything new until they can get his kidney function in a more "normal" range. The push to get this procedure done before the end of the year is because as of December 31; Presbyterian; or any other hospital within the Texas Health Resources network which includes all of Presbyterian hospitals, all Harris hospitals, as well as Arlington Memorial, and each of their outpatient and short stay facilities; will no longer be providers on our insurance . Evidently THR is in negotiations, but so far has not reached an agreement with, Blue Cross Blue Shield.

This is on top of the fact that as of November, our fabulous Dr. A is no longer a provider for Blue Cross Blue Shield either. In fact, all of Digestive Health Associates of Texas (DHAT)--which is each and every one of the gastroenterologists that has treated Ron in the last 3 years at both Presby and Harris HEB--are no longer accepted providers for BCBS. Contract negotiations are ongoing between DHAT and BCBS and have been since the beginning of summer. We have been told they do not foresee a solution for the next 6-9 months.

We've been told we are free to continue to use these doctors/facilities, however, we will have to pay at a much higher out-of-network level (along with meeting all deductibles up front).

Please be in prayer regarding this issue. Dr. A has been a lifesaver in that he has continued to provide treatment for Ron and it has all been through e-mail, text and phone calls, therefore avoiding payment of ANY sort. He is so incredibly diligent in his care of Ron; having done much research and talking with many colleagues across the country on Ron's unusual case . He has always made us feel as if Ron is his only patient; willing to take our calls, texts, etc. any time, day or night, including weekends...whether or not he was the doctor on call. God has certainly blessed.

The really sticky part comes when Ron needs to have a procedure done, like now. How do we know what to do? Is God calling us to seek out a new doctor and new hospital? Or is he going to provide the added funding needed to pay for the higher out-of-network expenses and have us stay with those who are intimately familiar with him literally inside and out?

It's times like this that I really struggle with hearing God's call. If this is His call--to leave behind all that is familiar-- am I brave enough, faithful enough to go. Do I have the kind of obedience Abram had when God called him to leave his country, his relatives and his father's house and go to the land He would show him? God called him to go, and he went...without knowing where he was going! (Gen 12:1). Or am I being overly dramatic here? Typically, choosing a new doctor is not THAT big of a deal; not big enough to be compared with leaving your country and relatives! But, leave behind three years worth of intensive, ongoing care-giving???

Oh, Father; help us to be obedient to whatever Your call may be. May we have the courage to walk by faith, not by our limited sight. That we may respond as Abram did as written in Gen 12:4 "So Abram departed as the Lord had instructed him..."

We covet your prayers, faithful ones!
Christie

“Some things are so important to God that they are worth interrupting the happiness and health of His children in order to accomplish them.”
~ Charles Stanley

We must believe what Christ has in store for us is worth our present pain.

Aye yi yi....

2010-11-13T23:48:00.000-06:00

....my unique guy!!!!!

We're spending another weekend pretty much home-bound. Ron again began experiencing symptoms of dehydration Wednesday. Despite another increase of fluid in TPN, his kidney function was back in the unacceptable zone; along with being dizzy/light headed. As of Friday, he was back on lactated ringers; which he had only been off of about 10 days. Yet we are so very thankful we are able to manage this at home. The IV is a bit of a nuisance since it must be infused as a gravity drip as opposed to going through a pump and being stored in a backpack like his TPN. And since he only has the single lumen PICC, this means he has his lovely IV pole to drag around with him for 4+ hours a day. Unfortunately, for now, he only has a small window of time each afternoon when he is not connected to either TPN or IV. Ella and Mila are fascinated with the wheels on the IV pole and Mila has especially become aware of the IV line coming out of Papa's arm. Neither of them have attempted to pull on it but are becoming curious about it.

In consultation with Dr. A, we've gone over and over what has changed in the last 6 weeks to cause this to repeatedly be happening. The only variable we can come up with is the introduction of a new medication around that time. This medication has never shown in clinical trials to act as a diuretic, but in Ron's case that seems to be what is taking place. It's causing his body to not hold on to the fluid it needs, leading him to become dehydrated. This medication was discontinued as of Thursday and he will have blood drawn again on Monday. Typically, the kidney function looks good while on the daily IV bolus; it's about a week later that the downward spiral begins.

Your prayers are coveted as we seek a resolution to this latest craziness!

Much love,
Christie

"As for me, I look to the Lord for His help. I wait confidently for God to save me, and my God will certainly hear me." Micah 7:7 NLT

What a ride!

2010-11-07T21:06:00.005-06:00

Oh My Word! These last few weeks have been crazy! I've wanted to send out an update but Ron's kept me so busy, I feel I'm meeting myself coming and going!

You all know about Ron's battle with dehydration the first to mid part of October. Well, two weeks later he started exhibiting symptoms again. This time the dehydration was worse and definitely affecting his kidney function, leaving us once again in the battle to keep him out of the hospital. Dr. A further increased the fluid level in his TPN and this time placed him on IV lactated ringers for 7 days.

Nurse Nordell prepping IV!

Poor guy, on top of feeling puny when he's dehydrated; he's also pretty much home-bound. We have to be more aware of his fluid intake and output, keep things fairly low key and he is not allowed to drive or leave the house alone (even for a walk).

Unfortunately, he got a little worse before he got better with a real scare Monday when his weekend labs came back much worse requiring STAT labs done Monday after work. Upon returning from the lab, I mowed the yard, repacked my hospital bag and took a shower anticipating a call telling us to head to Presby. Praise God, Dr. A's 7:30 PM call was to tell us the fluids had finally kicked in and his lab results were markedly better.

Though things were a little crazy, we were able to enjoy a fun weekend with out of town family. It was especially nice for Ron to have so many sporting events going on to keep him occupied and have his brothers here to share it with him since he really couldn't get out.

But what's really made it bearable, has been the time his sweet girls have come over to entertain him! Mila and Ella are almost 9 months old and growing like crazy!!! Ella is full out crawling and can get anywhere she wants in a hurry! Mila is scooching and is a champ at getting into a sitting position totally unassisted, and they are both pulling up on everything! They are SO MUCH FUN! And absolutely adorable, as well!

Big girls! E, left; M, right

M in walker, E crawling underneath

So cute it's scary! E, left; M, right

Mila unhappy about sharing HER Papa!

Good news throughout all of this is that when he went for his scheduled check up with his hematologist/oncologist; his coagulation level continues to remain stable. Thank you, Father!!!!

So there ya have it!
Christie

"My prayer is not that You take them out of the world but that You protect them from the evil one." John 17:15

Remembering - Pray FERVENTLY, Believing!

2010-11-04T20:51:00.003-05:00

Sunday, November 4, 2007 is forever etched on our hearts. This was the title to our e-mail update sent out November 5. We've come a long way, yet still so far to go.

If you'd like to reflect on God's faithfulness with us, read the following link:

http://nordellnotes.blogspot.com/2007/11/pray-ferventlybelieving.html

And check out this great music video that really speaks to me (or if you'd rather, the words are below)
http://www.youtube.com/watch?v=mfWAG-bnttQ&feature=related

BEFORE THE MORNING LYRICS - JOSH WILSON
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good for those who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain that you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

We made it!

2010-10-12T22:07:00.000-05:00

Thank you for your prayers; we made it through the weekend with no emergency trips to Presby!

Monday's labs show Ron is definitely dehydrated. Today, we had lactated ringers (IV solution that supplies water and electorlytes) and pole delivered to the house. I immediately received phone instructions on how to administer and we got him set up to run fluids through over a four hour period. We'lll do this each afternoon for the next three days. Praise God, he says he can already tell a little difference after just one liter.

Please pray for our sweet daughter-in-love, Stacee, and her family. Ryan, Stacee and the girls have been in Flordia for the last week visiting her mom, Diana, and step-dad, Jack. They were due to fly home this morning but late last night Jack began experiencing intense chest pain; long story short they found he had a torn aorta. They performed emergency surgery, however, he went into cardiac arrest and died this morning. This was very unexpected and, as you can imagine, has left everyone in shock.

I'm so thankful Stacee was there and had these last few days with Jack. Please pray especially for Stacee's mom, Jack's older daughter, as well as his grandchildren and great-grandchild. This is an especially hard blow in that Jack's son had died unexpectantly in a drowning accident about 6 weeks ago. Stacee's family is having a difficult time understanding why God would do something like this. And for Stacee as she continues to boldly share her comfort and peace in Christ during this difficult time.

And so the journey began...

2010-10-10T22:36:00.004-05:00

Three years ago yesterday (10-9-07), our journey began with a "simple" gall bladder surgery. Though the path is often treacherous and we can't see around the next bend, we rest in knowing God goes before us and prepares the way. He sees far beyond what we can see and we can trust both our earthly and eternal future to Him.

Where we are now:

We've been battling all weekend to keep Ron out of the hospital. He's teetering on the edge of dehydration, which in most cases can be addressed with increased intake of fluids, but in Ron's case is much more complicated. Due to his continued digestive issues, we have to cautiously address this in small increments because the more he takes in, the more prone he is to throw up which leads to further dehydration; causing a vicious cycle. And because he is on IV nutrition (TPN), receiving all of his nutrients, minerals, vitamins, electrolytes, etc. in a very controlled, artificial manner, we must also be very careful as to what he does take in as well as the amount....most of us need increased electrolytes, sodium and potassium when dehydrated; he does as well, but in his case, too much increase in these can tip the delicate balance and bring on severe complications.

Praise God for our fabulous Dr. A who has been in contact with us throughout the weekend (even though he is not on call this weekend...yes, he is THE BEST!) We've been able to nurse him along, avoiding a frustrating weekend in the hospital. We'll see what tomorrow holds.

Our pastor has been doing an awesome series titled "Why Church?" Why is it important to be a part of a growing, Christ-focused community of believers. He invited us to do a video interview sharing our story of God's faithfulness to His people and the joy we can have in Him in all circumstances of life. And let me just tell you, never take for granted the privilege of being a part of such a church; as well as the ability to go to church each week. We have spent so much time over the last three years unable to receive instruction from our Godly leaders, unable to worship and fellowship with our church family; yet they have been so faithful to hold us up, encourage us, and even support us financially. Thank you NRHBC family!

Back to this weekend:

I truly believe we have been under attack by the enemy who hates when God's people shares His greatness; His faithfulness with others. We've had more than just Ron's medical event thrown at us this weekend.

We received a call from Ron's mom's doctor informing us they believe her health is declining and suggesting the family meet with a social worker to initiate hospice services. Though Ron had been with her last Friday, he really felt the need to go see her despite his current medical state...not a huge deal in that it's less than a 1/2 hour away, however, this little venture served to push him to the edge.

Saturday brought on electrical issues...seems our 30 year old electrical system spontaneously fried the main breaker causing us to be without electricity for a while. Our electrician came out on Saturday and it will require more work on Monday. We're praying things will be resolved quickly, however due to the fact our system is so old and a type that is no longer legal to install; the particular type of replacement we need may be hard to come by.

Despite all these little annoyances; we praise God we are home and not in the hospital.

Please join us in praying for:
definitive direction as to how to treat Ron's current medical status
peace for the family as decisions are made regarding Mom Nordell's care
a quick (and inexpensive) resolution to our electrical issue
but mostly...that we will walk in a manner worthy of His call, so that our journey will be used to His glory!

Was reading last night in Acts 16. Verse 25 reminded me that we are to choose to praise God regardless of our circumstances. If Paul and Silas could praise and sing hymns to God after having been beaten and while confined in prison with their feet fastened in stocks, we can certainly choose to praise Him in our storms. This is our desire!

Much love,
Christie

Time to Regroup

2010-09-26T23:09:00.002-05:00

Where to begin?

You know the old saying "don't judge a book by it's cover". Well, that fits Ron well. Outwardly, he looks good, however if you look inside, you'd know how awful it really is the majority of the time. And how depressing it is to deal with this day after day after day!

The last couple of months have been quite the roller coaster...the highs of promising new ideas and the lows of hopes being dashed.

My sweet hubby has had some especially "dark days". I am so proud of my guy....it takes alot for him to come out and say, look things aren't going well and I'm really struggling here. He's not a complainer; and if you ask how he's doing he will typically say ok. The disappointment of hopeful changes, along with the increased mental fatigue from resuming classes, resulted in even more physical fatigue which really did a number on him. After much prayer and conferring with doctor, decision was made to step back and regroup.

You know how you feel when you have the worst flu ever...you can hardly function, you feel like you're in a mental fog, unable to focus on anything, you have no appetite and are just bone weary...well that's what he's been experiencing. And with the exceptional fatigue he's experiencing, he's definitely been regressing...feeling weak and rundown; no appetite, stomach churning along with nausea all day every day

He admits his number one priority needs to be on getting healthy but has been at a loss as to know how to go about this. After much prayer and conferring with doctor, they agreed it would be best if he dropped his classes this semester.

Right now, the overriding concern is his lack of sleep. Poor guy deals with so much reflux he gets no rest because he wakes up all night long choking. He can't take any kind of a sleep aid as this would dampen the automatic reflex to protect his airway (gagging/choking, then bolting to an upright position to keep things from coming up). If this reflex were to be dampened, he would aspirate with the potential of developing pneumonia or even literally suffocating due to blocked airway. Remember, due to a myriad of surgeries, procedures, etc. the flap between the esophagus and the stomach that should close to keep backflow from occurring is permanently open for him.

As of last Thursday, Ron has discontinued the latest medication and has backed off on eating (other than the fabulous fajitas at an anniversary celebration for some good friends today!) to see if he can get a little bit of a break. Although the new medication has helped a little, he may yak daily for 4-5 days and then have a break for a couple of days; the side effects have been troublesome.

So, there ya have it....may be more information than you'd like; but please use it as intended; to know how to specifically pray.

I've been listening to Beth Moore recently as she has been speaking on Isaiah 32:2 :

"Each man will be like a shelter from the wind and a refuge from the storm, like streams of water in the desert and the shadow of a great rock in a thirsty land"

And my thoughts turn to each of you. Thank you for loving us; as well as your willingness to stand in the gap and be a refuge to us during this stormy time of life.

Much love,
Christie

2010-09-06T22:00:00.002-05:00

Long time no update...

2010-09-06T21:51:00.002-05:00

...I know; but since I've started back to school (August 16) I feel I meet myself coming and going.
Ron's classes began last Monday. He is taking Algebra and English Lit and already the work is consuming a great deal of his time. It's been difficult for both of us to get back into the swing of things; actually, I'm not quite sure we're there yet!

Praise God for this three-day weekend! I took full advantage of the cooler weather to get some much-needed yard work done including trimming the shrubs; seeing this in type doesn't sound like much, but I tell ya, it was a beating! My right arm still feels like it's vibrating from the hedge trimmer and I have sore muscles in places that I never knew muscles existed! I was quite the taskmaster and even made Ron get out and help pick up the trimmings...poor guy, it wore him out!

But the highlight of the holiday was getting to spend time with our sweet girls. Oh, how we miss being with them on a regular basis!

On to the news I know you all really want...how is Ron doing? Well, we're excited to say his blood levels are staying consistent on the IV Lovenox and were just told last week that he can now go to anti-factor Xa checks every 6 weeks, yippee!!!! Even though he still has to have blood draws every 2 weeks to keep an eye on all other levels for TPN purposes; this is an encouraging step.

The new medication he began Aug 11 has helped some; he has gone a couple of different times for 5 days without yakking. WOO HOO!!! Unfortunately, this is usually followed by a spell of 3 or 4 days in a row of daily yakking. Very frustrating to him seeing as how there are no variables on the days he does or doesn't yak. It wouldn't be quite so discouraging if we could put a finger on what makes the difference. The trade off is the side effects from the medication. It leaves him feeling weaker, more lethargic than usual. We continue to remain hopeful and will take any good day we get.

We're constantly asked what we need...really, can't think of anything other than your continued prayer support and encouragement.

Specific things to pray for:

longer stretches of time with no yakking; this is the only way his esophagus will heal
increased strength and stamina
consistent, dedicated time in prayer and Bible study; as life gets busy, this becomes the first thing to be neglected
for my attitude; as I adjust to being back at work along with all the other responsibilities of being the primary caregiver and head of household duties; when I'm tired, I can get quite grumpy and say things I wish I could take back. For instance, after an extremely long week trying to juggle work, home, etc. I was frustrated with it all and blurted out "I want my husband back" Oh, how I wish I could take back those words! They were very hurtful and left Ron in quite a funk for a couple of days. I know he badly wishes to be his old self and would give anything to be able to do the things he used to do (even mundane household jobs) and to have me voice this was absolutely awful! Pray I will keep my tongue in check and when I'm feeling overwhelmed, I will vent to someone (anyone!) else.
(I'm sure I must have burst a few bubbles here, I know most of you think I'm so sweet, kind, compassionate,...but I tell ya, God sees my heart and knows what I'm really all about. What? No burst bubbles? Was it just my wishful thinking that someone thought I was all these good things? Haha)
And the biggie....as the new school year begins, so does our new insurance year... which means starting over with meeting all new deductibles, as well as increase in our premiums and increase in all co-pays. We know we'll have all Ron's maintenance medications, TPN and routine blood draws, but an otherwise a medically uneventful year would be fabulous!

So there you have it; the good, the bad and the ugly. It's humbling (and often embarrassing) to be so transparent but know this is what God has called us to and anything less would be lack of obedience on our part. Thanks for loving us in spite of who we really are!

Much love,
Christie

"And God will generously provide all you need. Then you will always have everything you need and plenty left over to share with others." 2 Cor 9:8 NLT

"What's more, I will be with you and will protect you wherever you go...I will be with you constantly until I have finished giving you everything I have promised." Genesis 28:15 NLT

"I said to the Lord, 'You are my Lord; apart from You I have no good thing' " Psalm 16:2 NIV

Half Year Birthday!

2010-08-18T20:40:00.000-05:00

Is it really possible? Yes, our sweet girls are 6 months old today!

The pictures below were actually taken at 5 months, but I tell ya they just keep getting cuter and more fun by the day!

Sweet Ella~

The Divine Miss M~

Double the blessings! Double the fun!

I may be a little biased...but aren't they the most adorable things you've ever seen????

Plan B

2010-08-11T22:11:00.003-05:00

I'm sad to report the increase in the new medication did nothing but cause Ron to sleep...ALOT! Poor guy was totally out of it, sleeping off and on in his recliner throughout each day (even though he had slept 12-14 hours the night before!) Yet the daily yakking continues. Dr. A had him discontinue the Baclofen Monday afternoon, however he will continue to take the Gaviscon (seaweed-based antacid), along with his other maintenance medications.

Today began Plan B; a medication named Bethanechol. Bethanechol is typically used for treatment of urinary issues; however, is also found to stimulate the GI tract to increase motility. Dr. A also says it may cause confusion, bladder spasms, muscle spasms, as well as a host of other COMMON side effects. He really wanted Ron to start on it while I am still on summer break so I can keep an eye on him. YEEHAW!

I'd be lying to say we weren't disappointed in the lack of any progression while on the Baclofen; however, we remain confident in our belief that God does indeed have a plan, and He IS at work as we expectantly wait.

Christie

New Plan of Action

2010-08-05T23:34:00.000-05:00

Forgive me for taking so long in getting this out...other than our email server being down a couple of days, I have no excuse!

We saw both Dr. M (hematologist/oncologist) and Dr. A (GI) last week.

Dr. M was pleased with Ron's blood levels staying consistent over the last month, so he's now going to have his anti-factor Xa (that's 10a) checked monthly. (Although, we got a call this week saying there was a major problem with his draw from when he was there and they wanted it rechecked ASAP. We should hear something back in the next couple of days; hopefully it was just a lab error). Good news is: Ron only has to see him every 3-4 months now...unless a problem shows up on routine lab results.

Dr. A was excited to add a couple of new medications with some definite goals in mind. With the number one goal being to get the yakking under control so Ron's esophagus can heal! And number two, to be able to return to more normal eating (without yakking).

One of the new meds is an old muscle relaxant (Baclofen) which has also shown to have the opposite effect on the GastroEsophageal Juncture (valve connecting the esophagus and the stomach) causing it to clamp down instead, thus keeping stuff from coming back up and hopefully reducing yakking. He is to take 1/2 dose 30 minutes before meals and at bedtime.

The second one is an over-the-counter antacid (Gaviscon) which has a seaweed base. This is taken after eating (whether it be a meal, snack, etc). The seaweed expands and acts as a barrier to keep food, bile, acid, etc from coming back up.

Ron says the Gaviscon is nasty to take. He feels like it's "growing" as he chews it...Yuck!

We were given a time table of two weeks...if it's going to work, we should see definite improvement within two weeks.

The first couple of days were really rough ones. As with most muscle relaxants, Baclofen can have a sedation effect; and it really knocked Ron on his tail! He was sleeping until noon, then getting up and sleeping in the recliner all afternoon. This combined with overall lethargy and stomach pain had him feeling quite puny. We ended up having to reduce the dose to 1/4.

Unfortunately, thus far, he has had no changes. Still yakking daily, along with major reflux. Yakking so violently last week, that he pulled a muscle; ugh! But hey, the muscle relaxant helped with that!

Tomorrow, Friday, we are to try to increase back up to 1/2 dose and see if his system can handle it. If not, they will have no choice but to discontinue this medication since it is obvious the 1/4 dose is doing nothing.

Please pray for an uneventful weekend for Ron, with no added side effects. We'd also love to see some clear improvement.

Much love,
Christie

A couple of Sunday's ago, our church was incredibly blessed to have Charles Billingsly lead us in worship. Below is one of the many songs that spoke to me.

Lord I Run to You

Lord I run to You
No one else will do
Lord in troubled time
I will run straight to You
Though my heart and flesh may fail
You're my ever present help
My tower of strength
My portion ever more

Lord I run to You
No one else will do
Lord You said we'd face
Trouble, pain and fear
But to be of good cheer
Be of good cheer
For You have overcome
Overcome the world

I lift my eyes up
To the mountains
Where does my help come from
It comes from You Lord
You are the Maker of heaven and earth
And there's nothing that's too hard for You

Waiting on God's Best

2010-07-27T19:35:00.003-05:00

Continuing my current ponderings as I read The Life God Blesses

Jim Cymbala states:
The challenge before us is to have faith in God, and the hardest part of faith is the waiting. ... To receive the blessing we need, we must believe and keep on believing, to wait and keep on waiting. We need to wait in prayer, wait with our Bibles open as we confess His promises, wait in joyful praise and worship of the God who will never forget our case, and wait as we continue serving others in His name.

We've come to realize Ron's medical issues have been going on for so long now; the seemingly endless waiting causing us to grow so weary, we no longer know what to pray. As we discussed and pondered, we were reminded that throughout the New Testament when people came to Jesus He would point blank ask them "what do you want from Me?"

Reflecting on His directness has caused us to step back and evaluate...what do we want from Him? Seems like an easy enough question:

We want Ron to be healed.
We want a "normal" life....one where we don't have to be tied to a schedule that revolves around home health, lab draws, doctor visits, PICC line maintenance, medication schedules and TPN management/administration.
We want to put behind us the overwhelming financial burdens brought on by continued medical issues.
We want our children to not have to worry about school loans they've had to take over due to our inability to help out.

The list of wants could go on and on!

There's nothing wrong with wanting these things. Hey, even Jesus wanted things to be easier.

"My Father! If it is possible, let this cup of suffering be taken away from me...." Matthew 26:39

And it's recorded in Luke 22:44 that:

"He was in such agony of spirit, that His sweat fell to the ground like great drops of blood"

before concluding in Matthew:

"Yet I want Your will not Mine"

As we examine this question, what do we truly want from Him, we find:
as hard as the last few years have been, (we would not wish those trials on anyone!) we can honestly say we wouldn't trade what we've learned, how we've grown, the blessing of experiencing God at work and the encouragement and provision we've received through His people, for anything!

C. S. Lewis so profoundly wrote:
"We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."

Ouch! We resemble that!

And still, we have the waiting...

Yet, just when it seems we can't take it any longer; God sends a glimmer of hope! We received an e-mail message from Dr. A (GI):

"I had a great discussion with one of the US experts on reflux disease regarding you and have great ideas to move forward with. I am very hopeful and excited about the new options."

Ron already had an appointment scheduled for tomorrow (Wednesday) with the hematologist/oncologist at Presby, so Dr. A said to come by to see him while there and he'd go over these exciting new options with us.

We are cautiously optimistic. We're trying not to get our hopes up too much, but we want to believe God does have a plan for Ron's complete healing. Could it even begin this week?

Please join us in praying. Oh, how we want Ron to be healed! But, above all else, pray that no matter how things turn out; we will continue to keep the faith. We will continue to believe His sovereign will is truly what is best for us, no matter how painful it may be at times. And that our desires, will fall in line with His will.

Oh, and please be patient with us in getting out an update...though we meet with Dr. A tomorrow, it's to go over a new plan of action; we most likely won't have any definitives for a while.

Much love!

"On You I wait all the day" Psalm 25:5

"Wait on the Lord; be of good courage and He shall strengthen your heart; wait, I say, on the Lord." Psalm 27:14

"I waited patiently for the Lord to help me, and He turned to me and heard my cry." Psalm 40:1 NLT

Engraved on the palms of His hands

2010-07-25T08:41:00.008-05:00

One of the books I've been reading this summer is The Life God Blesses by Jim Cymbala (pastor of the Brooklyn Tabernacle). Though it is a very small, short book; it is packed with wonderful nuggets of truth that speak volumes to my heart.

Many thoughts to share, but for now...chew on this selected (condensed) excerpt:

Throughout history men and women who trusted the Lord have had to learn the importance of "the last half hour"; one of the lessons we learn from Isaiah 49:8
"This is what the LORD says: 'In the time of my favor I will answer you, and in the day of salvation I will help you.' "
God affirms the fact that He will answer and will help His people. But notice the time of His help and answers: "In the time of my favor...and in the day of salvation." God has a designated time when His promise will be fulfilled and the prayer will be answered. It is a [time] He knows is best for the help to arrive and the deliverance to be accomplished. His answer is absolutely sure for those who trust Him, but it is not yet.
Herein lies the battle of faith - to hold on and keep believing God despite what our natural senses tell us. Our challenge is to wait in faith.
How many times have we battled this seeming contradiction? We pray with all our hearts and take our stand on His Word. But then...nothing, absolutely nothing seems to change. No miracle comes; no dramatic change occurs in our difficult situation. In fact, sometimes our circumstances seem to worsen!
God knows our tendency to give up during these seeming times of silence from heaven. "But Zion said, 'The LORD has forsaken me, the LORD has forgotten me' " (Isaiah 49:14).
Because the people of God back in Isaiah's day didn't see the fulfillment of the promise, they felt abandoned. "Where is God in all this?" they asked. "How can His promise be true? He must have forgotten or forsaken us..."
God, who is always grieved when His people fail to trust Him, responded immediately: "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! I have engraved you on the palms of My hands; your walls are ever before me." (v. 15-16)
We should shout with joy when we read, "I have engraved you on the palms of My hands."
No matter which difficulties we face or how badly life seems to be going, we must cling to God's unchanging promise "I will not forget you!" We need not be discouraged by what we see or distracted by how we feel emotionally; this truth is forever settled, "I will not forget you!"

More on this to come... :-)

Remembering Papa

2010-07-24T23:03:00.001-05:00

It's been a very busy, exhausting week (both physically and emotionally). A time of honoring Papa's home-going with both sadness and joy. The majority of the CAN clan members were able to gather, share and reminisce. Grandma did pretty well. She was confused at times, but on the whole understood what was going on.

Tuesday's visitation/remembrance was a sweet time with family and friends. The funeral home made a very nice DVD, from photos we had provided of Papa, which played throughout the time we were there. These photos were a reminder that no matter what was going on, you could always count on Papa to flash that great smile when called upon! He could be in the grumpiest mood and yet could turn on a that smile for the camera!

Wednesday's military burial was beautiful; including a pleasant breeze under the shade of the pavilion. I'm so proud of my hubby! I wish all of you could have been there to hear him eulogize his dad.

He began with Colossians 3:5 -
"For though I am absent from you in body, I am present with you in spirit and delight to see how orderly you are and how firm your faith in Christ is."
A very fitting verse that epitomizes what Papa would hope for each of his family members; to be orderly and to be firm in their faith.

And then he read Psalm 23 and shared his thoughts (with special emphasis on verse 4):
"even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me"

It was incredibly moving to hear him share his experience with this particular subject. He related how during one of his "dying spells", as he lay at death's door, how evident it was that he was not alone. He had an incredible peace in knowing God was with him; there was no fear, no anxiety...only peace. Having this knowledge gave him much comfort in knowing Papa was able to experience this same peace as he was ushered home.

Laurie's husband Tony shared as well, challenging us to carry on what Papa had begun. Two of Papa's most used phrases were "carry on" and "take care of it". And we do, Papa, pledge to "carry on" the character and values you instilled. We will "take care of it"...our families, our friends, our jobs, our faith and all that God has called us to; and do our best to uphold the legacy you have entrusted to each of us.

And then Ken led us in singing Amazing Grace.

It is isn't it? God's grace is so amazing! Sometimes we get bogged down by the busy-ness of this world and it takes a life-changing event to remind us of just how amazing God's grace really is.

Thank you for sharing in our time of grief, even if you were not able to be with us physically. Your words of sympathy and encouragement in cards, e-mails, texts, etc., have been so thoughtful. I apologize for not returning messages and phone calls, hope to remedy that soon.

Charles Arthur "Papa" Nordell

2010-07-18T09:53:00.005-05:00

Good morning!

I've been trying to get this out since Friday but it's been difficult, both physically and emotionally.

Thursday night at 10:15 we received a call from Ron's brother, Ken, informing us their dad (Papa) had been found unresponsive with very low oxygen rate and was being taken by ambulance to Baylor All-Saints. We headed there immediately...such pros at this that we beat the ambulance there!

It was evident Papa was in very bad shape. Unfortunately, his DNR paperwork had not been sent with him and they immediately intubated him and put an external pacemaker on him. After an hour and a half, we were informed the doctor wanted to meet with us in the family conference room. Fortunately, Ken, Shar, Laurie and Tony all arrived just as the doctor was coming to meet with us.

We were told Papa was heavily sedated to keep him from fighting the ventilator, as well as all of the other treatments taking place. He had pneumonia, he was not able to maintain an adequate heart rate and/or blood pressure without the intervention of meds and he looked to be in septic shock. They were also doing a CT scan to see if he had a stroke or a brain bleed of some sort. The doctor was informed he had DNR paperwork in effect. Being that he was on full life support, his wishes had definitely been violated.

We contacted Kathie and Leonard and were all in agreement this is NOT what Papa would want. We chose to keep him on life support until family could arrive. Once he was settled in CardioVascular ICU we headed home (4:30 AM) to get a couple hours of sleep.

Ken & Shar arrived early enough to meet with the doctor who informed them he was definitely in septic shock as well as acute renal failure on top of the other issues, however he had been taken off the pacemaker before transporting to CVICU and his heart had been maintaining on it's own throughout the night. They did begin to wean him off of sedation and he was aware and responsive to questions...squeezing hands and nodding to yes/no questions. Ryan arrived and was able to communicate with him as well. The rest of the family was scheduled to arrive around 9:30.

At 8:45, we received a call from Ryan telling us Papa had gone into complete heart failure.

Typical of Papa, he determined to do things his way and continued to have automatic reflexive breathing (even though there was no heart or brain activity!). What a blessing for the family to arrive and see Papa as though he were sleeping, complete with snoring. He drew his last breath at 10:45. There was no pain, no prolonged suffering...he peacefully went to sleep, surrounded by his loved ones. We were so thankful he went this way, without us having to take him off life support; what a comfort to us.

We all went together to talk to Mom (Grandma). We weren't sure how she would respond but she did very well considering. She was a little confused at first, thinking we were talking about her Dad (she has dementia) but after going over things again, she understood.

The siblings and spouses met at the funeral home Saturday morning and had a very easy (although very lengthy!) time making arrangements for Papa. Everyone was in agreement as to what Papa would have wanted. What a privilege to go through Papa's Bible and choose some things that were obviously meaningful to him. He was a man of few words; however he was consistent in his thoughts and beliefs whether they were popular or not!

We then took the opportunity while everyone was around to clear out Papa's room and disperse his belongings.

Papa could be a stubborn old coot, but his family was EVERYTHING to him and he leaves behind a wonderful legacy, as well as a very large family. He dubbed his family the CAN (Charles Arthur Nordell) clan!

wife, Ruth...they would have celebrated their 65th anniversary August 1.

first born:
Kathie, husband: Terry, of Whitehouse and children:
Jason, wife: Christie, children: Max & Taylor of Abilene
Josh of Tyler
Kristin, husband: John, kids: Kayla and Carson of Houston
Michael, wife: Rachael, daughter: Esther in transit to mission work in Brazil

Ken, wife: Shar; of Jacksboro and daughter:
Nikki of Lubbock

Leonard, wife: Nancy of El Paso and children:
Davis, wife: Ashley of Albuquerque
Lianna, husband: Blake of Tucson

Laurie, husband, Tony of Mesquite and children:
Jeremy, wife: Julie, children: Jonah, Hudson and Malorie Kate of Austin
Whitney, husband: Jorden of McKinney
Zach of Austin

and the baby:
Ron, wife: Christie of North Richland Hills and children:
Ryan, wife Stacee and daughters: Mila and Ella of Fort Worth
Aaron of Addison

Siblings (Papa was the second oldest of 5):

Louise, husband, Gordon (Louise passed away this same afternoon after a lengthy illness)
Mildred, husband, Glen
Yvonne
Dean, wife: Char

Couple of things found in Papa's Bible:

"Let all things be done decently and in order"
I Corinthians 14:40
This verse fits Papa perfectly!

Papa had written this in his Bible:
Christian:
CHRIST- is all
I- I
A-am
N-nothing

We love you Papa! You are greatly missed!

We Will Remember!!!

FORT WORTH -- Charles Arthur Nordell, 90, passed away on Friday, July 16, 2010.
Service: 10:15 a.m. Wednesday in Dallas-Fort Worth National Cemetery. Visitation: 1 to 3 p.m. Tuesday at Laurel Land Funeral Home of Fort Worth.

Chuck was born Dec. 4, 1919, in Greeley, Colo., to Arthur and Irene Nordell. He married Ruth Love on Aug. 1, 1945, in New Jersey. He served as a Major in the U.S. Army during World War II. He retired as a Civil Engineer with Texaco.

Survivors: He is survived by his loving wife of 64 years, Ruth Nordell; children, Kathie Koch and husband, Terry, Ken Nordell and wife, Shar, Leonard Nordell and wife, Nancy, Laurie Apel and husband, Tony, Ron Nordell and wife, Christie; 20 grandchildren and spouses; 10 great-grandchildren; one brother; and three sisters.

Results are in...

2010-07-13T22:51:00.002-05:00

Sorry we're just now getting out an update, we were waiting for official report from Dr. A who was waiting on pathology reports. May be more information than you want to know, but some wanted details and I only wanted to do one mass e-mail.

Findings from endoscopy and colonoscopy:

1. Severe erosive esophagitis from the upper esophagus to the lower esophagus – no evidence of fungal infection or viral infection. Biopsies consistent with severe esophagitis related to reflux of gastric acid. (Dr. A remarked his esophagus is worse than on last study and looks like raw hamburger meat...YIKES!)
2. Significant amount of retained fluid in the stomach consistent with gastroparesis (paralyzed stomach or poor gastric motility)
3. Moderately sized hiatal hernia – allows more reflux from stomach into esophagus
4. Small ulcer in stomach with nearby polyp. Biopsies reveal acute and chronic gastritis – inflammation of the gastric lining without evidence of bacterial or viral infection.
5. The pylorus (valve between stomach and duodenum) thickness as noted on Upper GI, was likely related to nearby ulcer.
6. The small intestine lining look healthy with normal looking villi (finger like projections). The beginning of the duodenum as it leaves the stomach had an abnormal configuration due to previous surgery and scars but not significantly blocked.
7. The small intestine appeared to move but there was reflux of digestive juices from dilated portions of the small bowel. Biopsies from the small intestine were normal without evidence of infection or inflammation
8. Altered folds in the colon on the left side of the abdomen, likely related to scars, possibly from previous drains in that area while transverse section has sharp angles (zig zag effect) making more prone to blockage.
9. Dilated superficial veins in the colon in the right side of the abdomen related to extensive previous surgeries and scarring that altered the route of blood return from the colon to the inferior vena cava. Nothing to do about but be aware; due to blood thinner therapy, if any rectal bleeding occurs seek medical attention immediately.
10. Small polyp in the ascending colon in the right side of the abdomen. This polyp was a tubular adenoma. Not cancerous but if left in, could develop into cancer in 5-10 years. Therefore, need repeat routine colonoscopy in 5 years.

Plan:

1. Continue Nexium twice daily for acid suppression
2. Trying to get answers about using Misoprostol to help protect the stomach and assist with GI motility; greatest concern is the effect on kidney function. In other people, it would be less of a concern, but with only one kidney, concerns for possible detrimental effects are raised. One nephrologist said no concern, another said don’t use, another said he had never thought about it. Not reassuring, so still polling colleagues
3. Continue Metoclopramide for now but increase dosing to more frequent use to increase GI motility and hopefully lessen reflux/vomiting.
4. Another option is Erythromycin. An old antibiotic that would make everybody nauseous, now use it at lower doses to spur stomach motility. Inexpensive but dosed like metoclopramide – 4x/day.

On a better note; we've kept quite busy the last couple of weeks with lots of time spent with family. We had a great 4th of July spent at the lake. Since Ron had to be off the blood thinner for 5 days preceding EGD/Colonoscopy, he was able to really enjoy his time there. He rode the jet ski and played a little water volleyball. It was so good to see him have fun! It totally wore him out for several days, but he says it was well worth it. Unfortunately, he started back on the blood thinner Wednesday so play time is over.

Last weekend we enjoyed more fun with family in town. We were so excited to get tickets to the Friday night Ranger game (yippee for $10 ticket nights...complete with fireworks!) but with all the rain we had, the game was delayed until 9:30 PM. We took advantage of the delay by inviting the family to our house for homemade ice cream and a hilarious time playing MadGab. We did go out to watch the game in it's entirity (until 1:30 AM) only to find they cancelled the fireworks, announcing it after the game was over!

Saturday, the guys golfed and the girls enjoyed spending the day with our sweet Mila and Ella while Stacee and Ryan both worked. Ron was able to sleep in a little and then meet up with the guys for lunch while I grocery shopped and caught up on some household items before all joining up for dinner and an evening visit with Mom and Dad Nordell.

It's always good to have the family around, something we've too often taken for granted over the years. We are incredibly blessed to have such supportive, encouraging family members and the opportunity to see the majority of them throughout the last month has indeed been a treat.

Alot of information to take in. Ron was disappointed they didn't find something that they could "fix". Please continue to pray for wise discernment as to treatment; as well as complete healing, along with patience and hope as we wait!

Much love, Christie

"He is a wise man who does not grieve for the things which he has not but rejoices for those which he has." Epictetus

"Godliness with contentment is great gain." I Timothy 6:6

"But I trust in Your unfailing love; my heart rejoices in Your salvation. I will sing to the Lord, for He has been good to me." Psalm 13:5-6

Starting July off with a BAN*G!

2010-07-02T20:45:00.003-05:00

I can't believe it's already July...summer seems to be quickly slipping away.

Tummy time! Mila, left; Ella, right

We've stayed busy with weekly trips to Dallas for various appointments/procedures but have also enjoyed time spent with our sweet girls as we help out so Stacee can work some; definitely the highlight of each week! They are at such a fun age...smiling, rolling over, "talking" and really becoming interactive with people and their environment; as well as "blowing bubbles" and drooling like crazy!

Little Miss Sunshine, Mila!

They typically sleep 10 hours a night and still need to be fed every 3+ hours during the day; then play some and then nap about 45 mins between each feed. They are doing fabulous, especially considering their adjusted age! At their last appt they weighed in at: Mila 12 lbs, and Ella 12 lb 3 oz. and are 23 1/2 inches and 24 inches. Stacee and Ryan are doing a great job with them; they are healthy, happy, easy, babies.

Ella ready to hit the pool!

We've been blessed in so many ways the last few weeks. Several people randomly sent us financial gifts at a most difficult time; allowing us to not only pay off the new a/c compressor, but also put a little back into our savings. Why does it always amaze us to experience God's faithful provision? He promises to "supply all [our] needs according to His riches in Christ Jesus"; why do we struggle to trust Him in this? Forgive us, Father, help us in our unbelief.

Even more amazing to us, is that people would take it upon themselves to step out and bless us monetarily, as well as through acts of services. A special thanks to each of you for your generosity and a shout out to a special someone who gave of his vacation time to do some much-needed tree trimming for us. You're a blessing, brother!

On to Ron:

Between regulating the blood thinner therapy, implementing a low potassium diet (which has successfully gotten potassium level back within normal range) and tweaking meds to see if we can get increased yakking under control, Ron's not felt real terrific. Poor guy, the new med he was switched to made him even more sick for about 4 days until it was discontinued.

Dr A decided it was time do an Upper GI to take a new look at things, so Thursday morning we battled the traffic to be at Presby by 8AM, ugh! The results show definite reflux with significant esophagitis (inflammation of the esophagus)-nothing new there; but with as much medication as he's on, the hope is it would be better controlled. Unfortunately, all the yakking he does exacerbates this chronic condition.

The results also show the valve between the stomach and small intestine seems thicker than expected but looks to be functioning properly. Thankfully, there is no evidence of blockage or narrowing. Dr. A wants him to have an EGD-- Esophagogastroduodenoscopy (scope of esophagus, stomach, duodenum) to evaluate these abnormalities; as well as a colonoscopy--yeah, we've reached that age! Fortunately, they are able to do them together, so he's scheduled for Tuesday, July 6, at Presbyterian.

Ron must be off the Lovenox (blood thinner) for a few days before these are performed, which actually works out to his benefit. For the 4th we are going to the lake and since he'll be off the Lovenox, he has been approved to ride the jet ski...as long as he doesn't do anything crazy...basically only allowed to cruise around the lake, but he's super-excited about this opportunity at normalcy!

Please pray as Ron has these procedures done next week. It would be so good to find something definitive that could be "fixed"; this daily yakking is not only frustrating for him and extremely wearing on him, but also has some potentially nasty long term effects.

As you celebrate the freedoms our country enjoys, I challenge you to be especially mindful of the freedom we have at Christ's expense.
"If the Son has set you free, you are free indeed" John 8:36

Much love,
Christie

Notes from random devotional readings:

"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland."
Isaiah 43:19 NLT

"For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs."
Zephaniah 3:17 NLT

God gets the most glory in the life surrendered to Him, though it's hard for a self-sufficient person to submit. He does the most work in our helplessness.

Father, help me to see my weaknesses as a place where You can demonstrate your strength. God, I'm asking you to do something new and miraculous!

"But He said to me, "My grace is sufficient for you"
2 Cor 12:9

Trusting God to do something new and miraculous! I know He is faithful and always provides everything we need...not necessarily in the way we would hope, yet better than what we could imagine!

Mila, pink; Ella, red

We Will Remember

2010-06-20T21:24:00.002-05:00

Each year, as Father's Day draws near, I find myself reliving both the pain and the joy brought about 9 years ago. Though we found ourselves in the midst of every parent's worst nightmare; we also found ourselves experiencing God's love and faithfulness, His mercy and grace in a way we would have never known had this circumstance not taken place.

Sometimes I think others believe I live too much in the past. I confess, I often find myself thinking about "momentous events" that have taken place in years gone by. And there are particular days that especially cause my heart and mind to reminisce. However, I don't think this is unhealthy.

God reminds us in Deuteronomy 4: 9 NLT
"Watch out! Be very careful never to forget what you have seen the Lord do for you. Do not let these things escape from your mind as long as you live! And be sure to pass them on to your children and grandchildren."

We are called not only to remember all that He has done but to faithfully pass on from one generation to the next a lifelong reverence for God and His sovereignty. My prayer is that as I look back, I will be reminded of all that God has done in our lives; and remember that He can be trusted for today...as well as for our future. Just as He showed Himself more than sufficient in the past, He will do it again!

"Our children will hear about the wonders of the Lord. His righteous acts will be told to
those yet unborn. They will hear about everything He has done" Psalm 22:30-31 NLT

"O my people, listen to my teaching. Open your ears to what I am saying...I will teach you hidden lessons from our past - stories we have heard and know, stories our ancestors handed down to us. We will not hide these truths from our children but will tell the next generation about the glorious deeds of the Lord. We will tell of His power and the mighty miracles He did....He commanded our ancestors to teach them to their children, so the next generation might know them -- even the children not yet born -- that they in turn might teach their children. So each generation can set its hope anew on God, remembering His glorious miracles and obeying His commands."
Psalm 78: 1-7 NLT

This Father's Day, as I find myself once again remembering the many miracles God has worked in and through not just Aaron, but the entire situation; I also find myself grieving for the family of EF. Our prayer throughout this tragic ordeal was that God would receive glory in and through everyone involved. EF pled guilty to Driving Under the Influence and Assault with a Deadly Weapon. He accepted a plea bargain of 6 years in prison with the possibility of parole after 3 (for good behavior). It has now been 8 years, and EF is still incarcerated. We receive word from the Parole Board every 6 months when he is up for review, and each time he has been denied. It grieves my heart that instead of allowing himself to be drawn to Christ, it seems EF has taken a different path.

Please join us in praying for EF and his family. We can't imagine the pain they must feel as each new holiday passes. We still believe God can work a miracle here, if given the chance.

Also, join us in praising God for His infinite grace...not only is our sweet Aaron alive, but a testimony to God's miraculous healing power!

(By the way, If you have no idea what I am talking about, e-mail me and I'll share Aaron's story with you)

This song has been playing in my head all week and seems to speak our thoughts perfectly!

We Will Remember
Tommy Walker
http://www.youtube.com/watch?v=JoqV2ucPsaI

We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness

You’re our creator, our life sustainer
Deliverer, our comfort, our joy
Throughout the ages You’ve been our shelter
Our peace in the midst of the storm

With signs and wonders You’ve shown Your power
With precious blood You showed us Your grace
You’ve been our helper, our liberator
The giver of life with no end

We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness

When we walk through life’s darkest valleys
We will look back at all You have done
And we will shout, our God is good
And He is the faithful One

Bridge
Hallelujah, hallelujah
To the one from whom all blessings flow
Hallelujah, hallelujah
To the one whose glory has been shown

We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness

I still remember the day You saved me
The day I heard You call out my name
You said You loved me and would never leave me
And I’ve never been the same

We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness

Happy Father's Day!

2010-06-20T20:01:00.000-05:00

Papa and his girls! Mila left, Ella, right

When Everything Falls Apart

2010-06-12T23:51:00.004-05:00

Sorry I'm just now getting around to updating; I've had a sinus infection that kept me down the first part of the week and have been playing catch up ever since.

Ron's appointment with the hematologist/oncologist brought no surprises. Dr. M started him on daily Lovenox (anticoagulant/blood thinner) through his PICC line. It's a little scary since no one (at least they know of) has ever had Lovenox administered this way; so he's starting on a very low dose and has had two blood draws already this week to establish a baseline and to monitor specific (antifactor 10a) level. Because the doctor is also an oncologist they have their own pharmacy, lab, infusion clinic (for chemo) and yet, they've never had this scenario. My sweet husband, always the guinea pig. It's a challenge to be learning these things along with the specialist doctor. The pharmacist even had to research the best way to administer the Lovenox and teach me how to do it.

The major concern is bleeding. The two times they tried Ron on Lovenox (when they had to be injected into his belly), he always had bleeds (hematomas). In these cases, they were visible. Now that the Lovenox is administered through his PICC there are no obvious sites to watch; which means if he were to have bleeding, it would be internally. We're hoping that the previous bleeds, when receiving the injections, were due to the multiple sticks under the skin not because of the Lovenox in and of itself.

The Lovenox therapy is a preventative measure to guard against future blood clots. This does not bust up the existing blood clots; they should resolve over time (usually +/-6 months). When asked why he develops blood clots we were told once you have a blood clot; for some reason, your body tends to develop more.

Dr M also said he doesn't believe that the blood clots are what's causing the edema, but are just a small part of the puzzle.

We're still adjusting to the low potassium diet thing; which has been difficult, mainly because I haven't felt well so haven't taken the time to sit down and figure out recipes to go with these new restrictions therefore, I haven't been cooking much. My major project for this week is to come up with a plan of action. Not that he eats that much, but the things he typically did eat, are (mostly) no longer an option. No big deal, just a matter of adjustment.

So, there ya have it...our week in a nutshell!

Christie

"Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33 New Living Translation

"Be strong and courageous. Do not be afraid or terrified...for the LORD your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6

Great song below
Everything Falls by Fee
http://www.youtube.com/watch?v=ZvjJ9TYA8cE&feature=related

You said You'd never leave or forsake me
When You said, this life is gonna shake me
And You said the world is gonna bring trouble on my soul
This I know

When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on

When I see the darkness all around me
When I see that tragedy has found me
I still believe your faithful arms will never let me go
And still I know

When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on

Sorrow will last for the night
But hope is rising with the sun, it's rising with the sun
There will be storms in this life
But I know You will overcome, you have overcome

When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on

Helpless

2010-06-07T17:35:00.002-05:00

I've put off writing this update because...well, because truth be told, I'm prideful. And I'm tired of feeling so needy. And I'm weary of this messy season of life we're in.

Yes, I confess, I'm in bondage to PRIDE. I prefer to see myself as a confident, independent woman who can handle life on my own, thank you very much. I can paste a smile on my face with the best of them, and say the right words "I'm good, how are you?"...for a while; then the tiniest of cracks causes the facade to completely crumble.

Now, there's nothing wrong with confidence and independence, but, honestly, there's denial involved in thinking I can do it all on my own.

Rick Warren in The Purpose Driven Life states "I need you, you need me; we need each other". I totally agree with him; but you see, I never thought we'd be dealing with a life-long illness. It's not so bad to have to accept help for a short amount of time, but incredibly humbling when it's long term. Reality is, WE CAN'T do this without you--your financial assistance, your physical help, your emotional support and especially, your spiritual encouragement through prayer.

I KNOW God has called us to be transparent; to share the good and bad, highs and lows of life with you; to publicly put feet to our faith. But, oh, it's hard when it seems to be unending lows. It's hard to think that people open their e-mail and think, good grief...it's Christie again spouting her gloom and doom. However, when we keep what's going on to ourselves, you don't know how to pray for us. So, as I set aside my pride, and let you in on what's going on; I do so with a humble heart.

Ron had abdominal ultrasound and Doppler of lower extremities about 10 days ago. And yes, they found blood clots; some old (and bigger) and some new. We meet with the hematologist/oncologist this Tuesday to come up with a game plan. We know it will involve blood thinners but not sure how it will be administered. Lovenox injections are not an option - he tends to develop hematomas. Oral blood thinners are not an option - due to his digestive issues including the tethering of bowel, his body would not assimilate this medication in a manner that would be safe or beneficial. Heparin injections into his PICC caused potassium and glucose issues (which was a contributor to his episode of unconsciousness Thanksgiving), so that is not an option, either.

I'd be lying to say this doesn't make us anxious. And yes, we know we're to be anxious for nothing and, yes, we know we're not to worry about tomorrow, but we're having a hard time fleshing this out at the moment. No, we're not losing our faith; though some days are harder than others; we know God has a plan...we may not like it or understand it, we may feel battered and bruised but we KNOW our circumstances don't change who God is!

"I will never forget this awful time,
as I grieve over my loss.
Yet I still dare to hope
when I remember this:
The faithful love of the Lord never ends!
His mercies never cease.
Great is His faithfulness;
His mercies begin afresh each morning.
I say to myself, “The Lord is my inheritance;
therefore, I will hope in Him!”
Lamentations 3:20-24 New Living Translation

I had also mentioned in our last update Ron's issues with his blood work over the last couple of months. This is an ongoing problem with last week requiring blood draws on two different days (requiring multiple sticks since PICC wouldn't draw and they had a hard time getting a usable vein); due to high potassium and chloride numbers. Usually TPN can be tweaked to help with little issues that crop up, problem is...he's not receiving any potassium in his TPN so now we're dealing with figuring out how to modify his diet to hopefully bring these numbers down. How do you modify a diet, when the guy hardly eats anything as it is?

Potassium is an electrolyte. Elevated potassium can cause a multitude of issues including arrhythmia, dehydration, muscle weakness, lethargy. You can have elevated potassium if your kidneys (or in Ron's case, kidney) are not filtering properly. And in Ron's case, it's hard to distinguish symptoms since he daily deals with muscle weakness and lethargy and is always in a delicate state of hydration. So far, he has not exhibited any symptoms related to the heart.

As we've tried to adjust his diet, we've found just about everything he exists on is on the high potassium list: protein drinks, Gatorade, instant breakfast, peanut butter, milk. And it seems ironic that all the stuff that's "good" for you...whole grains, fresh veggies and fruits, even fish!...are all things that are high in potassium. UGH!

I'm so very thankful it's summer time so I'm able to be home to deal with these issues. Not exactly how I had hoped to spend my time off, but you do what you have to do, right?

On top of Ron's issues, I've been fighting some kind of a bug with stomach issues, horrendous headache and body aches for the last couple of days but am so glad we went to church anyways this morning. Our associate pastor's sermon "Amazing Grace: My Chains are Gone" really spoke to me about living in bondage..my bondage happens to be to pride...imagine that! And this bondage keeps me from experiencing all that God has for me. We also sang a new worship song, Helpless (lyrics below) that was very appropriate for what we've been going through lately. Thanks, Danny and Wayne.

And I must say, God continues to amaze us. We struggle to live from paycheck to paycheck each month without having ANY room in our budget for unexpected expenses, along with our savings dwindling oh so quickly. We've been fretting over how in the world we're going to pay off Ron's hospital bills and now $1300 for the compressor it took to repair our air conditioner. What a surprise to receive a very unexpected anniversary gift from a couple who on more than one occasion felt impressed to send us a monetary gift (without knowing the financial struggles we were facing at the moment!) Thanks so much for your obedience to bless us in this way! Your faithfulness will help pay for our brand spankin' new compressor!! Oh, how I love a fully functioning air conditioner in the Texas heat!

This is probably filled with alot of rambling but as I've always said, this is more for my benefit than yours! Writing out my thoughts and feelings are my much-needed therapy!

Know that although we've been going through a rough patch; we choose to find joy in life: our nightly board game after dinner, a peaceful summer evening watching the sunset at the lake, the sweet coos and smiles from our precious grandbabies, evening bike rides, time with family just hanging out...we are blessed in so many ways; and never take that for granted.

I'll try to update again after we meet with hematologist/oncologist Tuesday. Please pray for definitive answers to our questions about anti-coagulation (blood thinning) therapy. And pray for us, as we seek to honor God as we walk this path He has laid out for us.

Much love, Christie

Wish I had an audio to go with this but...hope this speaks to your heart as it did mine.

Helpless

I wasn't created to live this life alone;
Made for Your glory, I am not my own.
Lord, Your strength is made perfect in me,
So I'll boast in the weakness I see.

I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.

Lord, in myself I am not enough.
I need Your Spirit; fill me with Your love.
All I am and all that I do
Means nothing at all without You.

I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.

Anchoring Deep

2010-05-27T07:11:00.001-05:00

My dad loves to tell how when I was a little girl I wasn't one to shy away from adventure. I was the one who would try anything and everything, especially if it involved doing something daring with him...motorcycle stunts, skiing on his legs, hanging onto his neck as he swam when I was too young to swim on my own. Preparation for the adventure of the roller coaster life I'd live as an adult?

I've been working on this post for several days now, but it's been difficult seeing as how I tried to break my fingers, wrist, hand, arm on Monday doing something totally stupid. That awful P-word always gets me in trouble. I was sure I could do something totally out of my league; I'm self-sufficient...I don't need help. HAH! Praise God I "only" hyper-extended tendons in my right hand and forearm. The pain and lack of ability to do much of anything with that hand (including type, so please overlook, typos, etc) are a constant reminder that I am NOT superwoman and need to get over myself and ask for help when I should. As Proverbs 16:18 says "Pride goes before a fall"; in my case, LITERALLY!

Anywho, on to the real update:

Over the last couple of weeks/months Ron's had a few little things crop up; nothing horribly bad, but enough to make me a little nervous that something big was brewing.

It started with labs being slightly off (phosphorous and sodium), no big deal...tweaked TPN. Slight edema (swelling) in legs...not uncommon; yet new labs show slight dehydration, hmm...not quite the norm since swelling usually means excess fluid. Next, PICC (less than a month old) won't draw...ugh! Edema continues despite changes and is actually worse, especially in his left leg...very noticeably. And, of course, he has the chronic indigestion, reflux and yakking.

Dr. A was concerned enough he decided it was time to come in for a face to face consult so we could come up with a new plan of action. His concern is that with all the tweaking things should be much improved, however it's only gotten worse. He's especially concerned this could point to a blood clot, since swelling is increasingly predominant on the left side. So, Dr. A has ordered an ultrasound of Ron's lower extremities and his abdomen, which he will have done today. And what if there is indeed a clot? The only treatment option is blood thinners, specifically Lovenox. This is where we both start to get nervous. We all know would a rough time he's had on the Lovenox.

Ron's situation is always a delicate balance; we are constantly adjusting medications, tracking input and output and monitoring activity. He basically lives with constant infection in his digestive tract, which is a major contributor to the indigestion, reflux and yakking; and just like the rest of us; any kind of infection causes overall yucky feeling as well as weakness, lack of motivation and general lethargy. He takes an antibiotic that is specifically for bacterial infections in the GI system, but can only take it for a week and then has to be off of it for a couple. When he's on it, things are much improved; when he's off...things slowly get worse. This poses another concern for Dr. A; Ron becoming immune to the antibiotic, so he is going to swap the antibiotic for a stronger one that he'll take 7 days, be off 7 days then back on for the next couple of months.

I have to confess; I've had a couple of meltdowns over the last few weeks that left me feeling quite melancholy for a few days. All of these little health issues, along with spending a night with Ron's dad in the ER (he was admitted for 3 days but is doing ok now); at times just seems neverending and quite overwhelming.

Just when we feel there's nothing left to be stripped of; we're hit with something else. I think the icing on the cake was being denied by Presby as a charity case and finding we will owe them a substantial amount of money from Ron's three hospitalizations last fall. It was quite a shock, since they have always approved us in the past but for some reason, we no longer meet their criteria. UGH!

On a good note, Ron finished his semester very strong; making an A in his Anatomy & Physiology and a B in Math. I'm so proud of him! He was also able to ride along with his golfing cronies for the back nine a couple of weeks ago. He played a couple of holes (even birdied one!). Then, May 16th we had a big early 91st birthday bash for Ron's Mom, which included 34 out of 42 immediate family in attendance. Great time together.

Also, in the craziness of the last couple of weeks of school, we have been shopping for our new stovetop and oven which are being generously provided by some very special people. Our house being 30 years old has made it quite the challenge to find anything that will fit it's current cutout dimensions, therefore will need some modification work done before installation. But I'm not complaining...we are incredibly blessed by this couple's generosity and are looking forward to our new appliances.

Yesterday, we celebrated our 31st anniversary. Well, I can't say we celebrated; I don't think me eating leftovers, Ron yakking and both of us being up most of the night due to AC going out is much of a celebration...we memorialized? We plan to do something next week, when life is a little less chaotic and we can really enjoy a date.

Sorry, I don't want this to turn into a pity party. As I said, sometimes it just all seems overwhelming. We really are doing ok. Although we wouldn't be without the firm belief and experience in knowing God is on His throne; nothing takes Him by surprise and He cares about the details of our lives and does have a plan.

"Against all hope, Abraham in hope believed...he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He promised" Romans 4:18

Hope's power is that we have the energy and desire to go on living because we believe something better is coming.

"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19

What does an anchor do? It keeps the ship on course when wind and waves rage against it. The anchor of hope is sunk securely in Christ.

As you can see, we have much need of prayer at the moment; and we covet yours. Thanks faithful ones!

Much love,
Christie

2 months and 2 years

2010-04-18T21:52:00.005-05:00

Today our sweet girls turned two months old. They go for their checkup on Thursday (they'll actually be 9 weeks then). We're all anxious to see how much they weigh now; scales at home show around 8 1/2 lbs; which means they've almost doubled their weight! Way to go girls! And way to go Mommy!

Ella left; Mila right

Uncle Aaron with Ella

Uncle Aaron and his girls: Mila left, Ella right

Though I've only been a Grammie for 2 months; I feel I've been practicing for this all my life! There are so many great things about being a Grammie...my sweet Ella and Mila, the joy of seeing our eldest being such a wonderful daddy; but, the very best thing about being a Grammie is sharing it with Ella and Mila's Papa.

Not quite 3 years ago, I was grieving the thought of not having him around to share the joy of someday being grandparents together. And now it's been 2 years (today) that my sweet guy was undergoing his BIG major surgery in hopes of giving him the chance at a semi-normal life, which would include the luxury of eating. We knew all along this would be a long, hard road; but we never really thought that 2 years later he'd still be strugging so much. We may be in denial; but we continue to hope and believe it is still possible for him to improve; but in reality, this may be as good as it gets. And what if it is? Well, though we'd like for things to be different...it doesn't change who God is. And we will choose to continue to daily praise Him, trust Him to guide and direct our every step; and be our sufficiency. HE IS ABLE!

We sang one of my favorite Chris Tomlin songs in church this morning that always ministers to me. Scroll to the bottom of the blog and you can listen to it by clicking on my playlist and selecting the song.

I Will Rise
There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul;
I can say, "It is well."

Jesus has overcome,
And the grave is overwhelmed.
The victory is won;
He is risen from the dead.

I will rise when He calls my name;
No more sorrow, no more pain.
I will rise on eagle's wings,
Before my God, fall on my knees and rise,
I will rise.

There's a day that's drawing near
When this darkness breaks to light,
And the shadows disappear
And my faith shall be my eyes.

Jesus has overcome,
And the grave is overwhelmed.
The victory is won;
He is risen from the dead.

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,
"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise

It's not easy bein' green

2010-04-17T20:38:00.001-05:00

Spring is my favorite time of year!

I love waking to the sound of birds calling to each other. I love seeing newborn ducks on the pond near our home. I love the gorgeous display of wildflowers. I love the freshness of spring air (when the pollen count isn't so ridiculously high!). To me, these are reminders of the promise that all things are made new in Him who gives us life.

Along with springtime, comes spring cleaning--including: weeding, trimming, mowing, etc., preparing our lawn and flowerbeds for summer. I really don't mind the yard work...it's fun to see how the hard work now, pays off later (which I can attest to after experiencing a beautiful yard last summer.) Yet, lately, while working in the yard, I find myself daydreaming/wishing for: a sprinkler system, healthy trees, new patio furniture, flowerbeds brimming with an abundance of beautiful flowers (that don't require replanting from year to year), and as long as I'm dreaming, a pool would be nice, too!

As I was spending a typical evening in the yard pulling weeds, God reminded me "you know, it's not easy being green" (and in my sweet, humble spirit I was tempted to respond "YA THINK???") He graciously ignored my attitude and continued "yes, it takes a lot of work to keep the yard and beds looking good. But, remember, you reap what you sow". Then, He got to the crux of the matter..."it's not easy being green with envy, either."

BUSTED!

Yeah...you know what I'm talking about; the whole grass is always greener on the other side mentality. Too often, I find myself not only wanting more, but being jealous of what others have instead of choosing to live in contentment. Yes, I know (well, I don't know from experience, but I've heard) "green" doesn't buy happiness. Many people who are rich in "green" are poor in other ways. They spend their time and money accumulating things yet never truly experience the joy found in relying on Christ and His sufficiency.

Though we may not have much green, we may struggle to live paycheck to paycheck (honestly, I'm always amazed at how it works out each month...on paper, it certainly doesn't!), we may never own our "dream home", drive our "dream car", go on our "dream vacation" or be able to give all we'd like to our children (and now grandchildren); we are incredibly RICH!

We are RICH in the hope we have in Christ; RICH in grace, RICH in love, RICH in generous and faithful family (and friends); RICH in the security that God is with us ALWAYS and He will supply all our needs according to His riches in glory (Phil 4:19).

Yes, we've experienced it time and time again. It's not about how much we do (or don't) have. Our call is to obediently follow wherever He leads; and trust- no matter the circumstance-that He is faithful. He promises to equip us and give us the strength to not just live victoriously, but abundantly as well.

This is our inheritance...this is the legacy we strive to pass down to our children and our children's children. Our desire is to live a life worthy of His call.

Hope you are enjoying your spring as much as I am mine!

Christie

"Godliness with contentment is great gain" I Timothy 6:6

Tough Love

2010-04-10T14:55:00.002-05:00

Been a while since I've updated strictly on what's going on with Ron (and me) so I'm devoting this post completely to us (besides, haven't seen our girls since Easter so don't have any news or pics of them; must remedy that SOON!)

Things have been rockin' along here without much change; other than Ron having issues with his PICC line (which was only 6 weeks old) requiring replacement on Good Friday. What better way to spend a holiday than a little trip to Presby, right? And we had the added bonus of seeing Aaron while in Dallas for the afternoon!

We were so thankful they were able to utilize the same location and replace with a single lumen, as opposed to the double lumen they removed. Now that he only needs blood draws every other week and has not required daily injections of any kind in quite a while; they felt comfortable in downsizing to the single which can be used for cyclical TPN as well as the blood draws. It's frustrating to see that he developed fibrin so quickly this time. I know any time there is a foreign body in our system our natural defenses will do what they are created to do, which is protect; in this case by creating fibrin (clots). Fortunately, this does not interfere with "pushing" TPN or flushes, however once the build up occurs, "drawing" becomes an issue. Unfortunately, as long as he is on TPN, this is a battle he will continue to fight. We're praying this one will last much longer.

Ron continues to take 2 classes at Tarrant County College; .
His schedule is:
Monday: 10AM-noon Anatomy & Physiology lab; 6PM-7:20PM A&P lecture
Tuesday: 2:00-3:20PM Pre-Algebra
Wednesday: 6-7:20 PM A&P lecture
Thursday: 2:00-3:20PM Pre-Algebra

He enjoys taking the classes and the mental interaction is great for him. However, it pretty much takes all of his time and energy to participate in the classes and keep up with the homework.

Home health comes weekly to do PICC line dressing change, and draw labs every other week. His meds remain the same however he had to add Metronidazole (antibiotic that specifically battles intestinal bacteria) for a week and Dr. A had to tweak his TPN due to elevated sodium and phosphorous this week.

He still lacks much stamina/energy and most often yaks on a daily basis. He desires the enjoyment of eating, the socialization of it, but the consequences aren't fun; therefore he pretty much dreads eating. Then again, it doesn't seem to matter if he eats, he yaks either way. I can't imagine dealing with that stomachache that causes a bloated, nauseous feeling all day every day, regardless of what he does; poor guy. He's a trooper, though, and rarely complains.

Having a "laid back" personality is one of Ron's biggest assets. He's always been a go-with-the-flow, take life as it comes kind of guy. This trait is what has gotten him through this seemingly never-ending ordeal. Unfortunately, this same trait easily becomes his greatest enemy. He has become quite lackadaisical.

A couple of months ago it became evident it was time to implement some "tough love". One of my sweet co-workers brought to my attention that my constant reminders and "doing for" Ron may subconsciously be robbing him of his dignity; while also putting the added responsibility of not only being his wife, but basically his world, on my shoulders.

Ron's an adult, capable of making choices for himself. If he chooses not to do those things he knows to do (take meds in a timely manner, daily physical therapy, etc) then it's up to him to deal with the consequences. This has been VERY HARD; especially since those consequences affect both of us!!!

And, yes, I know, Ron's quite spoiled! By his own admission, he likes for me to remind/do for him and one of my greatest joys in life has always been to care for my husband and children. But I think I've created a monster! My guy tends to only do what he wants to do and it's important that he begin to take ownership. Don't worry, we haven't been doing this cold turkey. I've slowly been relinquishing (read forcing on him!) some of these duties. Where it used to be "here are your meds", "time to do your physical therapy", let's go for a walk, now", "here's you some juice". I'm now struggling to keep my mouth shut and not ask: "Did you remember to take your meds? Did you do your physical therapy? Have you gone for a walk today? Had anything to drink lately? What have you eaten today? Isn't it time to get TPN ready?", etc.

Though I'd been trying to take it slowly, it is now time to get hard core. As difficult as it has been, it's time for me to give up this juggling routine and have him be accountable for self-care, along with daily living activities. And believe me, it's been HARD; especially when I KNOW he hasn't taken his meds or done his physical therapy, etc.

Please don't think I'm ragging on my husband. that is not my intent at all! Just giving you a glimpse into our world. And, might I remind you, God is the king of tough love! Just take a look at the old testament and remember, due to lack of obedience, how many of the bazillion Israelites actually were allowed to enter the promised land ? Now, I'm not trying to set myself up as God...no way! Just sayin', I'm in good company here. And don't worry, I don't plan on banishing Ron or anything that drastic if he doesn't follow through.

On another note, I'm really proud Ron's been trying to step out in faith a little more and has started attending a men's breakfast every Friday morning at 6:30 AM. I thought he was crazy when he told me he'd signed up for this one in particular after the men's conference. He doesn't sleep well due to all his reflux issues and I was concerned about the early morning; why not choose one that meets at another time? However, he was determined. He's enjoying it immensely, however, the cost is he spends the rest of Friday recuperating from the early hour/lack of sleep! Oh, well, gotta start somewhere, right?

During this time of adjustment I'm claiming (for both of us):
"I can do all things through Christ who gives me strength" Phil 4:13

Happy Easter ~ Happy Due Date

2010-04-04T21:58:00.010-05:00

Yes, today was Stacee's official due date! And yet, our sweet girls are now 6 1/2 weeks old! But, as Psalm 139 reminds us "You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed."

They are definitely growing (notice the chubby cheeks in the pics below); they're developing their lungs (they can get quite vocal!); they are having wakeful periods and they are really beginning to develop strong neck muscles. Their feeding schedule is still every 3 hours during the day but at night they have one 5 hour stretch and then another 4-5 hour stretch; and they are now able to handle increased intake amount.

We had a great first Easter with them...but then again, any day spent with them is great!

Enjoy the pictures!

Hmmm...do you think Ella looks much like her Daddy? (photo of Ryan at 2 months)

GG'ma (Grammie Christie's ~ mom) with Mila; Ella with Mommy

Ella ~ GG'ma, have I got stories to tell you!

GG'ma and her great granddaughters; Ella left, Mila right

Four generations of girls! Ella, left & Mila, right; Stacee; Grandma Diana and Grammie Christie; and GG'ma (Great G'ma Doucet)

Our sweet little hunny bunnies! Mila, left; Ella, right!

Mila in her Easter dress

Alright, Uncle Aaron; you gotta pay to play!

Ella (left) ~ Hey, Mila, Uncle Aaron's the best, isn't he? Mila ~ Yeah, and we'll have him wrapped around our little fingers in no time!

Mila (left) ~ Hey, Ella, what's with these goofy ears they keep trying to put on us?

Mila, left; Ella right ~ If we humor them for a few pics, maybe then they'll leave us alone

Ella

Ella

Mila left, Ella right (their little jammies say Womb mates ~ complements of Aunt Patti!)

Mommy, we've had enough ~ call off the paparazzi!

6 weeks of twin bliss!

2010-04-01T21:12:00.009-05:00

Yes, it's true ~ our girls are 6 weeks old and yet we still haven't reached their gestational due date. They were officially due Sunday, April 4; instead, we'll celebrate this Easter Sunday with them at home.

Sorry, no 6 week pictures yet; but enjoy these previously unseen pictures, and the walk down memory lane!

Ella & Mila with POOH! 5 weeks

Daddy and his girls 4 1/2 weeks

Our little sweethearts! Mila left, Ella right (4 weeks)

First doctor visit

Snug as bugs in rugs!

March 9 - Finally home!

1 week old, Ella left, Mila right

Ella's first day in crib, 6 days old

Mila 6 days old

Ella, left, & Mila, right 1 week old

Mila soakin' up some rays

4 days old ~ so serious

1st time together again ~ 4 days old

We love you, sweet girls!

Grandma's Here!!! & 5 Weeks Old

2010-03-25T22:56:00.007-05:00

Mila ~ the shirt says it all!

Grandma arrived from Florida today. We are so glad she'll get to hang out with us for the next couple of weeks. She brought lots of goodies, including Easter stuff and some really cute clothes! Wow, if we get this much stuff for 5 weeks, just think what 5 years will be like!

Grandma gettin' in some double lovin'! Ella left, Mila right

Grandma and Mila

All this excitement wears a girl out ~ Ella snuggled in to Mommy

It's been such a long time...

2010-03-24T22:56:00.003-05:00

Yes, I've been a slacker, no excuse!

Maybe this will make up for it...what do you think?
(Ella on top, Mila on bottom)

Nothing new to report with Ron. Still yakking pretty much daily (no rhyme or reason), energy level the same; weight consistent, etc. Springtime does seem to help with his outlook (along with two sweet little girls to love on periodically!) He does need to have some "maintenance" work done on his PICC since it is refusing to draw blood. So, a trip to Presby for IR is in the very near future. Thankfully it still flushes and TPN infuses just fine; most likely fibrin has formed over the end of it again. UGH

Now, on to the girls!

Ella on left, Mila on right

Ella and Mila are doing well. They had their one month (yes, they really are a month old already!) check up last week. They are up to a whopping 5 lbs 14 oz (each) with Ella now being 19 inches and Mila 19 1/4 inches long.

Ella on left, Mila on right

Stacee and Ryan are required to wake them every 3 hours for feedings during the day; but were told to start stretching out the night time feed, however they are not to go more than 5 hours between feeds. Being that their adjusted age will be relevant until they are a year old, developmentally they are right on target--eat, sleep and poop 24/7!

Ryan went back to work Monday and is really missing all three of his girls, poor guy. Stacee's mom returns Thursday to help out for the next couple of weeks.

Over Spring Break, Ron and I spent two different nights with them to allow Stacee and Ryan to get some much needed rest. Of course we had the added benefit of some snuggle time with our girls, which is always a bonus. On Wednesday night, Ron stayed up and helped with the midnight feed and I did the 3AM and 6AM on my own, then Ryan got up to help with the 9AM. Saturday night, the girls did a great job on sleeping longer ~ Ron helped with the 10:30 PM feed, I did the 3:30AM and Stacee was up for the 7:30.

The rest of Spring Break we just hung out around here; I cleaned flower beds, pulled lots of weeds; and generally loved being out in the sunshine (while it was around). A very restful week on the whole.

I may be biased, but I tell you, our girls are SO DARN CUTE!!!!

Agreed? (Mila on left, Ella on right)

And yes, unfortunately they are still under quarantine.

Could go on and on, but time to set up TPN! I'll try to send out more soon

Love, Christie

The End!

Can it be....?????

2010-03-18T23:43:00.006-05:00

Mila on left, Ella on right

Ella

Mila

Ella on left, Mila on right

Squirmy girls!

Ella on left, Mila on right

Can it be we've only known you for one month? It seems we've loved you all our lives!

Happy One Month Birthday, Ella and Mila!

Love, Grammie & Papa

Ella and Mila's 1st doctor visit

2010-03-13T20:41:00.000-06:00

Mila and Ella had their first appointment with their pediatrician Thursday. Ryan and Stacee are very pleased with their doctor...espcially since they had to choose a ped on such short notice! NICU required the girls be seen within 48 hours of being discharged to assure there were no setbacks.

The ped is pleased with how well Ella and Mila look. Each of the girls now weigh 5 lbs 4 oz. (Bad Grammie, I didn't ask R&S if they've grown any in length). Mommy and Daddy are to continue to wake the girls every 3 hours for feeds and to keep a strict chart of input and output. Unfortunately, she also said they are to remain in isolation for another 6-8 weeks. :(

Due to their prematurity, their little immune systems will not be as strong as a full term baby. In preemies, everything is measured by "adjusted age", which for them would be -3 weeks (tomorrow would mark 37 weeks gestation). We all know preemies miss some much-needed time in the womb, and that they didn't "bake" long enough to get all the necessary antibodies for fighting germs, disease, and infection. Therefore, they require extra time away from others in order to keep germs at bay as their immune systems become more fully developed.

There are many other precautions that have to be taken with premature multiples including:

minimal exposure to stimulation (which causes them to burn calories instead of utilizing those calories to "gain and grow")

the need for development to continue in the area of coordinating their entire systems to work together (still working on learning to eat efficiently so that they are not burning more calories than taking in...it's still hard work to get our little girls to eat!)

we are in the midst of RSV (Respiratory Syncytial Virus) season ~ which runs November through April. RSV can significantly impact the health of any baby, but preemies are even more susceptible to complications; with many pediatricians requiring babies to be in "RSV lockdown".

Ryan and Stacee are anxious to be able to show off their sweet little girls; but for their health and well being, they must strictly follow doctor's orders. Only visitors allowed for now are Grandma & Grandpa Walley, Grammie & Papa, and Uncle Aaron.

In the meantime, we will try to send out pictures as often as possible! Sorry, I don't have any to add today; even our time with the girls has to be limited.

"I wait quietly before God, for my hope is in Him" Psalm 62:5

Happy 3 Week Birthday!

2010-03-11T00:37:00.020-06:00

Mila snuggling with her Daddy

Little Miss Mila

Are we done yet, Mom?

Mila ~ I love Grammie this much!

Grammie feeding Mila

Ella's first bath at home

Ella ~ Just a shampoo and rinse today

Every girl needs a good stylist

Daddy dressing Ella after bath

Papa helping out

All snuggly now!

Papa & Mila

Mila ~ Papa, I wanna hold your hand

Grammie & Ella, Papa & Mila

Double the blessings! Mila on Grammie's right; Ella on left

Proud Papa with his girls (Ella on Papa's right; Mila on left)

Let the journey begin!

2010-03-09T22:11:00.004-06:00

WOO HOO!!! Our sweet little angels passed all the criteria of "rooming in" and tipped the scales today at 5 lbs 1 oz (each)! Way to go Ella and Mila AND Mommy and Daddy!

Ryan says they made it home safe and sound and the girls are doing well getting settled into their home. Please continue to pray as they transition into life together as a new family!

Mommy getting Ella ready to go home

Mila hanging out while waiting

Ella's ready to go

Ready to roll! Mila says: Thank you, Miss Gail! I love my beautiful blanket

Ella says: I love my pretty blanket, too, Miss Gail. Now, let's get this show on the road

Sweet new family...let the journey begin!

Homeward bound???

2010-03-08T22:20:00.004-06:00

Wow! What a whirlwind the last couple days have been. Mommy and Daddy are "rooming in" with Ella and Mila tonight in NICU. If all goes well, they may go home tomorrow; all 4 lb 13 oz (each) of them. Please pray for an "uneventful" night with our sweet, itty-bitty girls.

Ever popular pictures below; update to follow in a day or so!

Mila: Papa, before you know it we'll have you wrapped around our little fingers!

Mila: Come on, guys, hasn't anyone noticed I'm hungry???

Ella rockin' a sweet hat!

Mila says: Ho hum, this is so easy I could do it with my eyes closed!

Ella says: bye bye...I'm bustin' out of this joint as quick as I can!

Twinkie Progress

2010-03-06T21:52:00.011-06:00

I know you are most interested in pictures, however, I do have an update from the week. But first, here's a little teaser:

Mila and Mommy

Our girls were graduated to 3B Monday and were also upgraded to feeding by bottle or nursing every other feed while taking the other feed through feeding tube.

Grandma Diane, Stacee's mom, returned to Florida on Wednesday. Ryan and Stacee were extremely grateful for her help, and so happy she was able to hold each of the girls while here. She will be back to help out after the girls have come home and Ryan has returned to work.

Three generations of girls~
Mila, Mommy and Grandma

As of Thursday, Ella and Mila had regained their birth weight, plus some, and now weigh 4 lb 10 oz each. They are fed every 3 hours and on Thursday were upgraded to only having tube feed every third feed; nursing or bottle the other 2 of three.

Mila received her 2nd bath in the tub by Daddy and this time there was no crying! Ryan said she really seemed to enjoy it.

Mommy and Daddy have enjoyed "kangaroo care" holding both girls at the same time.

"Two are better off than one, for they can help each other succeed. If one falls, the other can reach out and help. But someone who falls alone is in real trouble...

Likewise, two lying close together can keep each other warm. But how can one be warm alone? ...

A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer" Ecclesiastes 4:9-12a New Living Translation

Stacee and Ryan both say the girls are very good. They never cry; just get a little squirmy and fuss a little sometimes when it's time to eat; but most often have to be awakened for feeding.

Mila

Ella has had several episodes of heart rate dropping and is still having a little trouble regulating her body temperature but not a huge concern. Part of being a preemie is developing the ability to coordinate all body systems. Hard work for a little girl.

Ella

Both girls are doing pretty well with nursing and receive a combination of breast milk and formula to equal @45 ml. They are also spitting up less often.

Ryan had his first week back at work and Stacee was released to drive as of last Thursday. Ryan typically goes by the hospital on his way to work to give one of the girls a bottle; and returns in time for 5 PM feed. Stacee goes up midmorning and stays until 6PM when they have to leave for shift change. Whew!

I'm sure there will be more to report by the end of the weekend; in the meantime, enjoy the pics of Grammie's first time to hold Mila!

Happy 2 Week Birthday Precious Ella and Mila!

2010-03-04T22:08:00.007-06:00

Together again...Mila (in hat), and Ella

A kiss for my sister!

Two-rrific!

Snuggle bugs

Twice as much to love!

Hey ~ you look familiar

Wake up sleepyhead ~ time to eat

Daddy feeding Mila; mmm, mmm good!

Do your Daddy proud Mila, and give us a big burp!

Ah, full tummy and my daddy holding me; life just doesn't get any better than this!

Grammie and Papa adore sweet Mila

Grammie, I thought I'd never get to "hold you"

Hey Dad, did ya see? Grammie's finally here!

Ella sharing a little girl talk with Grammie!

Daddy changing Ella's diaper

Nighty-nite precious Ella

Papa and his girls 2-28-2010

2010-02-28T23:31:00.001-06:00

Sunday Grammie was sick but that didn't stop Papa from visiting his girls! He arrived just in time to hold Ella as she was getting her tube feed.

Where's my Grammie when I need her?

Only got a couple pics of Mila, she was busy nursing with Mommy most of the time Papa was there.

Little Angels update

2010-02-27T21:59:00.003-06:00

Sorry I haven't updated in a few days, we haven't seen the girls since Tuesday but get progress reports each day. It's difficult not to see them but we will definitely do whatever is best for our little angels! We were hoping to see them this weekend, then I came down with a nasty, deep in the chest cough. Don't really feel too bad (until I start coughing) but am sticking close to home, and have pulled out the whole arsenal of meds and increased my vitamins in hopes of getting well as quickly as possible. (And praying fervently Ron does not catch it!)

Ella and Mila need to be trained to accomplish all the things they would have already developed in utero for full term gestation. One major area the girls are working really hard on is feeding. Babies usually develop the sucking instinct in utero in the 34-36 week timeframe, but they are having to learn this in the outside world. Mila is doing well on nursing, but Ella is being a little slower at catching on (although when Ryan was doing "kangaroo care" with her she was rooting around!) Ella has done fairly well on the bottle and Mila goes at it like gangbusters for the first 5 minutes, then she's totally worn out! They keep telling her she needs to be the tortoise, not the hare ~ slow and steady wins the race!

A couple of days ago they advanced to every other feed being by bottle or breast which takes all their energy. They are only allowed to nurse or take bottle for about 20 minutes then they supplement with tube feed. They don't want them burning more calories than they are taking in.

They tend to get over-stimulated very easily and the doctors are obviously very cautious. They've been told they are to limit visitors to just the grandparents, (but have been able to allow their only Uncle Aaron to meet them). Unfortunately, the no visitor rule will be for a while yet.

Thursday night Ryan and Stacee were able to give Mila her first bath. She wasn't too keen on it, until they were finished and had her wrapped in a warm towel. They then washed her hair which she really enjoyed.

Ella had a difficult time regulating her temperature so she was moved back into the warmer early in the week. However, she is now doing better and I believe she is now maintaining on her own. Mila is regulating her temp well and was moved to a crib (after she was able to get off phototherapy which was either Wednesday or Thursday. )

Both girls were having trouble with spitting up alot but we were happy to hear that so far today (up to around 3PM) they had not spit up at all...Way to go girls!

Since no one knows how long Mila and Ella will be in the hospital, Ryan has gone back to work (he'll take a couple of weeks off once the girls come home) He and Stacee are trying to establish a routine. Right now, Ryan takes Stacee up to the hospital on his way to work and they both go in for their 8AM feed. They say typically when they go in Mila is lying awake, quietly looking around. But, Miss Ella likes to sleep in and be up at night. Early bird and night owl??? HMMMMM....

Ella has gained a little of her birth weight back, now up to 4 lb 4 oz.; Mila is still at 4 lb 2 oz.

They are doing so well, but still have quite a ways to go. They remain in the highest level of care (4) in the NICU with a nurse ratio of 1:2. They may progress to level 3 soon, however they have to have space available and the other levels of the NICU have been full ever since they arrived. Ryan and Stacee don't mind if they stay there; once they move on the ratio of babies to nurse increases.

Stacee's mom will return to Florida on Wednesday, with plans to come back and help out after the girls come home. So thankful her schedule is flexible; allowing her the time to come whenever she is needed (or just wants to come spend time with her girls!)

I've been asked by several people when they will come home. Good question! It's not so much a specific time but a matter of accomplishment. Three things they specifically must be able to do:
1. consistently regulate body temperature on their own
2. breathe unassisted
3. eat unassisted

They are doing pretty well on the first two. The Neonatologist says the biggest factor now is "gain and grow".

We have much to be thankful for! Nine of which, I have to tell you, are the GREATEST coworkers/friends anyone could ever have. They are an incredible blessing to me, as well as my entire family, in so many ways; and, I confess, are probably the reason I've been able to stay semi-sane throughout our crazy life. On Friday they surprised me with a "Grammie" shower. They gifted me with all the things a Grammie needs: picture frames, brag book, toys, etc, AND a CAMERA!!! Now I won't have to rely on others for pictures of my little sweeties! Thanks girls! Your infinite encouragement, support and generosity humble me. I'll steal a line from MT and say "Lovin' what I do" (and will add) "and who I'm blessed to do it with!"

There's probably more I need to share or possibly some misinformation due to the fact I'm heavily medicated, but you'll have to give me a break. And I don't have any new pictures of Ella and/or Mila but I will attach a couple from my Grammie shower!

Much love,
Christie

PS: Big praise: cultures came back negative. Thank you, Father!!!

"Great and marvelous are thy works, Lord God Almighty."
Rev 15:3

One Week

2010-02-25T23:30:00.000-06:00

Happy 1 week birthday Mila Maree and Ella Renee! Grammie & Papa love you!!!!

Never get tired of looking at our sweet baby girls!

Not double the trouble, twice the blessing!

2010-02-24T17:22:00.006-06:00

Ella's hospital stats

Mila's hospital stats

This is actually Tuesday night's update. I was waiting on pictures before sending!

Today seemed to be a good one for Stacee, Ryan and the girls; even though it was hard for Mommy and Daddy to be away from the hospital. They spent time with the girls until early afternoon, went back at 6 for a support group for parent's of babies in NICU and then stayed for the next visitation time, which began at 8PM, where they were able to participate in feedings.

Mommy & Daddy at Ella's incubator

Mommy & Daddy at Mila's isolette

Ella in icubator

Ryan fed Ella her very first bottle and she did great! She took about 1/2 of it within the alloted timeframe, and then they gave her the rest through her NG tube. They don't want them burning more calories trying to feed than they are actually taking in so limit the time they can try to feed.

Daddy feeding Ella her first bottle

Ella likes her bottle!

Ella Renee

Enough with the pictures, let's get back to that bottle!

Mila's first time to be introduced to nursing went well. But after all the stimulation she was ready to be left alone for the rest of the evening. After her feeding tonight, Mila was laying on her tummy. She got agitated and picked her head completely up off the bed and turned it to the other side. She then got her little feet up underneath her and picked her bum up in the air several times until she got comfy. It was hilarious to watch!

Mila Maree

Mila's precious long skinny feet

Grammie with Mila

Papa with Mila

Mila in comparison to Papa's hand

Evidently we've got a couple of strong little girls. The nurses said that after the picture was taken yesterday of the two girls in the same bed, Ella proceeded to roll herself over away from Mila!

Please continue to pray Stacee (and Ryan) will get some much-needed rest and that our angels will feed and grow to be healthy, happy little girls. Can't wait to be able to get our hands on them!

Please pray for our little sweethearts

2010-02-23T23:30:00.000-06:00

Yesterday they moved Mila into the same NICU room as Ella, which makes it so much easier for Ryan and Stacee to visit back and forth between the two. Unfortunately, last night they found out one of the other babies in their room has an infection. Everyone now has to gear up in gowns, gloves, etc. They've done cultures on Ella and Mila to see if it has spread to them.

Please pray they don't catch this bugaboo (or any others for that matter!) Any infection can turn serious very quickly in a preemie, and we certainly don't want their progress hindered in any way. And while you're praying, also lift up this little one who has the infection.

On a good note, Ella's bilirubin is down to 7.5, therefore she has been taken off of phototherapy. Though Mila's is only slightly elevated, she remains on phototherapy, and (from what I understand) seems to enjoy soaking up the rays. Ryan said he got a cute picture of her lying on her back, arms stretched above her head with her little eye protectors on looking like she's sunbathing! Gonna be a bathing beauty just like her Mommy!

NICU doctor has written orders for both girls to be introduced to breastfeeding and/or bottle two times each day. Moving in the right direction!

Thanks for your prayer support! Our family appreciates you oh so much!!!
Christie

"Don't worry about anything; instead pray about everything." Phil 4:6 NLT

Melt my heart pictures!!!

2010-02-22T23:45:00.004-06:00

Meet the new family! Ryan, Stacee, Ella (in back/top), Mila

Our little angels!!! Mila on top, Ella on bottom

update on Ella and Mila

2010-02-22T21:39:00.003-06:00

Our sweet girls have had alot going on today.

Both girls have been placed under continuous photo-therapy for jaundice; their little livers aren't quite able to keep up yet, which is not unusual for preemies.

Little Ella in phototherapy

Little Mila in phototherapy

They have also both dropped down to 4 lb 2 oz, nothing to worry about...weight loss is expected in newborns.

Ella had her IV removed...hooray!!! She is down to having NG tube (feeding tube through nose), heart monitor and pulse oximeter.

Mila had her CPAP removed today, I'm sure she feels so much more comfortable without that obtrusive thing on her face. And not to be outdone by her sister, she also may have her IV removed soon, possibly as early as tonight. As of this writing she is down to just having her feeding tube (her's was through mouth down throat as of yesterday, assuming it's still the same), IV, pulse ox and heart monitor.

Please pray for Stacee and Ryan; Stacee is being released tonight. She has to be out of her room by midnight; they were hoping she'd be there one more night but insurance rules. They are broken-hearted to have to leave their sweet girls. I'm sure it will be difficult for her to get good rest as they travel back and forth to the hospital to spend as much time as they possibly can with Mila and Ella.

Attached pictures are a little difficult to see; trying to keep the masses happy by sending any pictures we receive.

Thanks for your faithfulness.
Christie

catching up

2010-02-21T23:30:00.001-06:00

I hate to think that when the Ron Nordell family comes to mind, you might think high-maintenance. But I confess, we do tend to do things in dramatic ways, don't we? In keeping with the tradition, our little girls certainly made a dramatic grand entrance late Thursday. What can I say?

It's been a very busy few days! Stacee's mom arrived safe and sound Friday morning. I know it's been so good for Stacee to have her Mom here. Everybody needs/wants their Mom at a time like this! And she has been so helpful in so many ways.

After our quite late night/early morning Thursday/Friday, we were beat. However, we got up early to make the trip to Presby for PICC line change. A tedious, time-consuming procedure but thankfully, no problems encountered. After grabbing a very late lunch, we headed to Harris, arriving just in time for shift change, therefore had to wait until 8PM to see our girls.

When we were able to get in to see them, we were happily surprised to see both girls had been taken off CPAP. It was wonderful to see their sweet little faces.

Saturday, we were only able to have a short visit. Ron stayed home and slept 'til noon...he really needed to catch up on some rest; while I went for a visit. Then Ron went up while I stayed home to prepare food for a big Gregory family (my side) get together. It was fun to share stories of our girls with everyone, along with the few pictures Aaron had on his phone; at the moment, we don't own a working camera! What kind of grandparents are we??? Mila and Ella are the first grandbabies on both sides of the family, as well as the first great-grandbabies on Stacee's side and my side of Ryan's family.

While Ryan and I were with Ella Saturday, they had to change her IV. Needless to say, she was not a happy camper! Her little cry sounded like a kitten! They put some sugar water on her paci to try to soothe her while they worked on her; which she loved, but she continued squealing while sucking...sad, but quite cute, as well.

Mila was having spells of apnea (poor little thing kept forgetting to breathe) so they had to put her back on CPAP. Necessary, but she was none too happy with that.

Today both have elevated bilirubin levels and are being watched for jaundice. Ella has also been having episodes where her sats have dropped and heart rate has elevated, especially when she gets all snuggled in with Mommy or Daddy. She gets too comfy and neglects breathing well therefore oxygen saturation drops. Ella was a little stinker and pulled out her NG tube twice today! She's also been upgraded from a warming bed to an enclosed isolette.

Mila is still on CPAP, which she really doesn't like. They keep it attached to her little head cap and she keeps shimmying down out of the cap which defeats the CPAP purpose; so they are constantly having to mess with her. This little doll prefers to sleep, however she can let out some lusty crying when she's unhappy.

They both have dark hair, long, long fingers and long skinny legs! Maybe they'll play their great, great Mamo's piano one day? Or follow in their Daddy's footsteps and be a runner? Who knows, but it sure will be fun watching them grow and develop their own personalities!

Stacee is doing well and is becoming a pumping machine. It's so good for the girls to be able to get Mommy's milk. I know she and Ryan are both VERY TIRED but are in love with their sweet girls and want to spend every minute they can with them.

Ryan and Stacee have been able to hold each of the girls alot, as well as do "kangaroo care" (skin to skin contact). They have been able to hold them during feeding (through feeding tube) and have been working on getting them to suck on a pacifier while being fed so they will associate sucking with full tummy; Mila's not too fond of the paci where Ella likes it but is having a hard time remembering to breathe when she sucks....there's just so much for an itty bitty girl to remember!!!

Ron and I went to see his parents after our visit this afternoon and were able to show them pictures of their newest great-grandbabies; making numbers 9 and 10; bringing the Nordell clan to a total of 42!

I'm sure I'm forgetting something, but haven't caught up on my sleep yet! Please keep praying for our sweet little angels. That they will continue to grow and develop in a timely manner so they may to be able to go home as soon as possible. I think Stacee may be discharged Monday or Tuesday and it will be very hard for both of them to be away from their babies.

Much love, Christie

Pictures of our angels!

2010-02-19T23:42:00.006-06:00

Daddy suitin' up for the big event!

Mommy and Daddy headed to recovery

Mila Maree

Happy Birthday, Ella Renee!

Daddy's first time to hold Mila

I could go on and on about how precious they are, but the pictures speak for themselves!

Happy Birthday Ella and Mila!!!

2010-02-19T09:45:00.002-06:00

We have babies!!!

Our sweet girls have arrived! Little Miss Ella Renee decided she was tired of hanging out in utero and was ready to meet her Mommy and Daddy. Stacee's water broke (just Ella's sac) Thursday evening as we were sitting at their dinner table at 8PM. After gathering packed bags, camera, video camera, phones, etc. they headed to Harris. Thankfully, Stacee's OB was there and upon examination already felt "body parts"; sonogram confirmed it was time to welcome our girls. Stacee was immediately prepped for C-section, Ryan was suited up and off they went.

Vital Stats are:

Ella Renee born at 11:15PM weighing 4 lbs 5 oz; 18 1/2 inches long
Mila Maree born at 11:17PM weighing 4 lbs 9 oz; 18 inches long

Both of our little angels are doing well for being 6 1/2 weeks premature. They are in the Neonatal Intensive Care Unit with IV's, feeding tubes, heart monitors and on CPAP (for breathing support). It is estimated they won't go home until around their official due date (April 4).

They both came out pink with APGAR scores of:
Ella 8.9
Mila 9.9

Mila came out screaming (I think she was not too happy her sister was so anxious to leave their snug little home); while Ella took a second to cry, but cry she did! The NICU nurse said Ella has had her eyes open, looking around, checking out the "outside world" and moving arms and legs quite a bit. While Mila just wants to sleep! She's barely peeped an eye open.

OB was very pleased with how things went and Neonatologist said they are not necessarily sick...just need time to continue to develop and grow. They will be very limited on contact (no visitors for a while; and being in NICU there aren't the windows where you can stand outside and see them). They are in NICU 4 which is the most intensive; but as they progress and develop they will move down the hall until finally rooming in -- where Ryan and Stacee will have to stay the night with them in the hospital doing all of their care to prove they are capable of taking care of them at home.

Unfortunately, after getting one picture of Ella, their camera died so I have no pictures to share as yet but will get some posted as soon as I get some.

I'm sure we'll have more to report later; I have not spoken with the new Mommy and Daddy yet this morning and we will be at Presbyterian all day for "maintenance" of Ron's PICC.

Please pray for our sweet girls, (as well as Stacee and Ryan), as often happens preemies may develop some critical issues before they develop fully. And for Stacee's mom (Diane) as she arrives this morning...I know it was VERY HARD for her not to be here with her one and only baby girl as she had her babies. And Stacee is ready to see her Momma!

Please forgive any typos or misinformation...we arrived home at 3:30 and I'm one tired girl!

Much love!
Christie and Ron
Nana/Grammie/Hey You (not sure yet!) and Papa

Long overdue!!

2010-02-07T22:50:00.001-06:00

Sorry it's been so long since I updated...Ron's been sick, which keeps me on "high alert".

Jan 29th, Ron came down with bronchitis. Thankfully, it was caught early and we were able to treat him at home...keeping that no hospital streak going! WOO HOOO!!! We were also concerned about Stacee since we had been around them a good deal that week, including the night before Ron spiked a fever. Praise God she has not shown any signs of illness. Stacee is now at 32 weeks and doing well. Being off of work and on partial bedrest has really helped. They have a website if you'd like to check them out: www.nordellfamily.shutterfly.com

Back to Ron, as I said, we caught the bronchitis early, keeping it from developing into anything else. However, he's overall felt like crud. He has also been having a great deal of digestive issues (more-so than usual).

It seems to go in cycles like this; he'll do fairly well for a few weeks, maybe even months, at a time--and then there will be several weeks/months that are just BAD where he feels he is fighting off yakking all day, every day. It seems everything constantly backs up and sit's in his esophagus ready to come up at the slightest provocation. We haven't been able to determine a rhyme or reason to it.

I often wonder if the stress of school exacerbates things. He enjoys the classes and needs something that gives him a purpose and keeps his mind engaged; on the other hand, school is really hard for him...it's been over 30 years since he had to study and it tends to bring on alot of stress and frustration while making him even more tired.

As you can imagine, this roller coaster is very much affecting his mood. It's a catch 22...down when he has nothing to do; or down when he's so worn out from school and studying that he finally gets sick and can't do anything.

Our life is not all gloom and doom...we try to encourage Ron to get out some and he's making an effort to step out in faith and try to do a little. He attended the men's breakfast at our church in January; a few weeks ago he and Aaron went to a Mavericks game and we've had a couple of birthday celebrations (Stacee, Jan 25 and Aaron, Feb 4). He has thoroughly enjoyed each of these events but is one tired pup afterwards; and always ends up yakking, ugh. He had talked about wanting to try to start going to both church service and Sunday morning bible study; but with the setback he's had, we've not even made it to church service the last few weeks.

More to share, but I'll save it for another time, this e-mail could easily become a novel!

Thanks for standing in the gap and praying us through these difficult times.
Christie

"I have learned that pain can isolate us and cause us to feel alone in our journey, even when we have those around us who care. But a word from the Lord companions us as nothing else can...because it goes into the very marrow of our existence.
I'm surprised at how small my vision is for God. I've walked and talked with Him for years, and yet I'm still startled by His generosity and jolted by His desire to know us and be known by us. To remind us of that, He has dispersed light to give us insight, direction, protection and hope that we might consider Him and His glorious ways."
from Catching Fireflies by Patsy Clairmont

"He comforts us in all our troubles so that we can comfort others" 2 Cor1:4

"Delight yourself in the Almighty and look up to God...pray to Him and He will hear you" Job 22:22

Good News ~ Happy Birthday, Stacee

2010-01-25T23:07:00.001-06:00

Happy happy birthday, sweet Stacee!

In celebration of our baby mama's birthday, the girls behaved themselves very well today! OB appointment went well; they monitored her for a while and praise God she had no contractions! Sonogram showed both girls look very good developmentally with each weighing right at 3 pounds. Being typical girls, though, they want to do things their own way and are both hanging out head up. If they don't turn between now and time of delivery (whenever that may be), they will be delivered via c-section.

Stacee was sent home with an oral medication (procardia) to be taken as needed if she starts having contractions again; but the contractions do not stop within an hour, she is to go to the hospital. They were very happy to be told Dr. B has upgraded her to partial bed rest for the next couple of days. They will watch and see how her body reacts and if things go well; she will be allowed to continue on partial bed rest. I know this would be a huge blessing; allowing her to supervise the completion of the nursery, as well as all the other things that need to get accomplished before these little ones arrive.

She will see her high-risk pregnancy doctor tomorrow and will now start seeing her primary ob/gyn weekly.

Thank you for your continued prayer.

Christie

Stacee update

2010-01-25T09:31:00.001-06:00

Received update from Ryan around 12:30 and they were going home soon. Stacee was having contractions 20 to 40 seconds in duration with a rate of 12 or so per hour. They gave her a shot of tributaline to help relax the uterine contractions. Babies heartrates continue to be awesome. She will see her regular ob today and high risk ob tomorrow.

Fetal fibronectin test was negative, which is good. (I believe this indicates if delivery is likely in the next couple of weeks).

Please continue to pray.

Christie

Stacee, Ryan and girls

2010-01-24T23:38:00.002-06:00

Please be in prayer for our sweet Stacee. She is 30 weeks along in her pregnancy with our grandbabies (twin girls--Mila and Ella) and has started experiencing some preterm labor. She went to the hospital last Thursday, they monitored for a while (babies doing well), gave her a couple of doses of terbutaline to stop uterine contractions and put her on bedrest for the weekend with plans to see her ob on Monday.

This evening we were over to take dinner and celebrate Stacee's birthday (which is Monday). She was experiencing mild contractions all day despite being on bedrest, and around 9PM went back to the hospital (they are there still).

Obviously, she's upset and worried about so many things that still need to be done (especially finishing the painting and putting together of the nursery) before our sweet girls arrive. They have the majority of their furniture for the nursery, car seats, stroller and some clothing, however baby shower is not until next month therefore they have no mattress's, sheets, receiving blankets, or other basic necessary items, yet.

Please pray for Stacee's health and the health of the girls', as well as for comfort and peace for both Stacee and Ryan. Pray that they will rest in knowing God is in control, His timing is perfect and as His word promises He has knit these babies together in their mother's womb--they are fearfully and wonderfully made and all their days have been written in His book before even one them has come to pass.

We are blessed to have each of you as faithful prayer warriors and never take that for granted!

Love, Christie

update

2010-01-13T22:48:00.001-06:00

It's been a couple of weeks since I last updated, but what can I say; it's hard to make time when I'm back at work, therefore I try to fit it in when I'm super tired and then I'm worried about exactly what I've written in my delirious state. ;)

Woo hoo! Good news...we made it 2 for 2 and are declaring the holiday hospital streak officially smashed! I'm even thinking of taking the packed bag out of the car.

We spent a very quiet New Year at home; very benefical to have extended time to rest and recuperate from our "eventful" fall.

The only excitement we've had lately is no school last Thursday due to weather; along with our discovery of a slab leak. It seems suddenly having heated tile floors is not a good thing, although they felt quite nice on the cold tootsies during last week's frigid days.

We spent Thursday with no water (read inability to brush teeth, shower or potty!) as well as the jaw rattling sound of an area of our kitchen floor being jack-hammered. I hate it when you overhear the boss say to his worker "I thought this was going to be a piece of cake". YIKES! Despite the challenge posed, the plumbers did an excellent job; they were efficient, kind, and great about cleaning up after themselves.

Unfortunately (fortunately?) there was no water leakage inside the house, however, if you don't have water leak within, insurance does not cover...bummer! So, three days of work and $1500 later; we once again have fully functioning plumbing. The only thing left to do is replace the few tiles they had to remove. I'm so thankful our new appliances have not been installed yet; I wouldn't want them dirtied by that fine dusting of silt from jack-hammering.

Ron's doing ok; discouraged to be having a spell of daily yakking, regardless of what he does or does not eat. His labs are staying within normal range further affirming Heparin must have been the culprit messing with his potassium level. All other vital stats are stable as well. He looks great but continues to have very limited energy and stamina. I'm sure most of us would feel this way if we were yakking daily, too.

Please pray as classes begin next week. He has wisely chosen to take only 2 classes this semester: he will retake the Anatomy & Physiology (which he had to drop last semester due to extensive amount missed last semester because of hospitalizations) and his next Math course.

We have a busy weekend ahead of us with a shower Saturday, honoring our newest addition to the family. Malorie Kate is a 9 month old sweetheart from China; daughter to our nephew and niece Jeremy and Julie, and little sister to the best big brothers, Jonah and Hudson. We are so excited to spend time getting to know Malorie Kate over the next 6 months as Jeremy and family are home on furlough (they work with Campus Crusade for Christ in Athens, Greece) until June.

On Sunday we'll be at my sister's after church rooting on the Cowboys.

Also, continue to pray for Ron; the daily yakking really gets to him and he's been in a bit of a funk the last several days. . . Ugh! Weight is stable; no change in energy level; still sleeping about 12 hours a night (almost always interrupted because of couging due to reflux). He does admit that some of the extended sleeping could be due to the fact it kills time; what's the use in getting up when you have a whole day stretched out in front of you but can't really do anything?

Thanks faithful ones!
Christie

"Peace isn't the absence of pressure. It's the presence of God and our attitude toward His provision in the midst of our stress."
"…for I have learned to be content whatever the circumstances" Philippians 4:11b (NIV)

And the crowd goes wild....

2009-12-27T23:45:00.001-06:00

It's been mentioned by many of the masses that it's been a while since I sent out an update...Sorry!!! Lots of excuses but the fact is, I've been purely lazy, therefore it's a pretty long one...it's also late, and I'm tired so it might include some totally random stuff.

Three hospital stays in less than three months definitely took a toll on us, but, I believe we're beginning to get back on an even keel.

Tuesday (Dec 15), we had a bit of a disconcerting report from Dr. A regarding Ron's labs from the previous day. Once again his potassium was way too high (6.1) and his glucose was too low (46). The only variable we could come up with is being back on Heparin therefore Dr. A discontinued his 3xdaily Heparin injections and did another blood draw that Wednesday (16th); results showed everything back to normal. CRAZY! Dr. A decided until we can come up with another plan, Ron is to stay off the Heparin. The following Monday's labs were completely normal.

It's such a fine balance when you live on TPN, the delicate intricacies of our bodies that God created, man has a hard time replicating. Add on Ron's penchant to develop blood clots and having so many side effects develop due to blood thinners brings on a heightened level of complication.
Here's the problem:
blood clots can be deadly, optimally requiring some type of blood thinner therapy
BUT, Ron's body doesn't metabolize oral blood thinners properly; he develops hematomas with subcutaneous Lovenox (blood thinner) injections and now we find Heparin (blood thinner) administered through his PICC seems to elevate his potassium level as well as decrease his glucose level.
So...it's back to the drawing board for Dr. A and Dr. M as everyone holds their breath and prays fervently that Ron will not develop any clots while off blood thinners. I must say though, it's been a great break for both of us; this means 3 less times a day that I have to flush, inject therapeutic Heparin, flush again, and inject heparin lock. Not that I'm counting...but that's 12 less syringes I have to deal with each day!

Wednesday, December 16, Ron had his appointment with the neurosurgeon at UT Southwestern. Dr. S is referred to as the "cowboy" of neurosurgeons (the preeminent neurosurgeon around with his training being with the best of the best, in Zurich). We felt very comfortable and confident of his assessment. Diagnosis: he definitely has an abnormality (That's my guy AB-normal!) but it is under 5mm, therefore, Dr. S feels good about doing nothing other than to continue to monitor for a while. Ron will go back in a year for testing to see if there are any changes. As long as things remain stable, he'll continue to go yearly (for several years) and as long as things stay the same, after these several years the time frame will then be lengthened. Even though Ron has a history of aneurysms, this will not effect the course of treatment. Aneurysms in the brain are totally unique from aneurysms in any other part of the body. They share the same name but the characteristics, the way they act and grow are completely different.
(By the way, this has absolutely nothing to do with why he passed out Thanksgiving.)

On Friday, December 18, he had his followup with Dr. A who was happy to see that he has pretty much regained all the weight he had lost during the last few months. We talked more about the importance of Ron concentrating on physical therapy and healing therefore the recommendation is to take a much lighter load this next semester, keeping his body from becoming overly fatigued and hopefully helping to keep his immune system up so that he doesn't have any crazy medical episodes.

Christmas preparations and celebrations have kept us busy. We've really enjoyed spending time with various family members, yet pacing ourselves by also getting a lot of R&R. We've slept in alot, taken naps and even spent all day in our jammies once...it's been GLORIOUS! The first couple of days of my break, when the weather was wonderfully warm, I was able to enjoy getting outside to catch up on some much-needed yard work. And, of course, the Christmas Eve snowstorm ushering in a White Christmas was great!

That's our recap of the last few weeks...other than the little glitch with heparin-induced potassium and glucose problems, they've been pretty good ones. Busy, but good. Ron does continue to have yakking episodes, although he had a stretch of 7 days (woo hoo!) without yakking, it's been back to daily for the last 4 or 5 days :(

I was super-excited to be able to post on my facebook Dec 26th that we were home therefore breaking our "holiday hospital" streak! We're planning on going 2 for 2 with New Year's Eve coming up, so please join us in praying for a continued medically uneventful Christmas/New Year's season.

Blessings to you!!
Christie

PS: Please know we LOVE receiving your cards, e-mails, texts, facebook messages, etc. You are all so encouraging to us and I am such a slacker for not returning, but, what can I say....life often gets in the way of our best intentions. Please know YOU are VERY MUCH appreciated!!!

Free at last....

2009-12-03T00:00:00.001-06:00

We're home!!! Very tired, but oh so glad to be home! As soon as we arrived home, I unloaded the car, ate a sandwich and then hit the bed for a good long nap.
Ron was asleep in the recliner before I could complete my sandwich!

Final results: all the testing revealed...no definitive answer as to why Thanksgiving's trauma took place. The best guess is he had a vasovagal syncope. (Aren't you impressed by my ever-increasing medical knowledge??? )

My best understanding is: Syncope is a temporary loss of consciousness and posture (fainting or passing out). Vasovagal refers to the vagus nerve which, among many other things, is responsible for heart rate, keeping the larynx open for breathing, gastrointestinal stuff, etc.

Vasovagal syncope is not an uncommon occurrence. It happens to many people in a variety of circumstances: people passing out at the sight of blood, fainting due to dehydration and/or forceful yakking, etc. But, Ron's a "professional" yakker, so, why did it happen now? Not sure; could have been the result of elevated potassium, force of yakking, possible dehydration, or the cutoff of blood circulation due to the positioning as he was yakking (similar to reaction when you stand with your legs locked, blood pressure drops and you don't get enough blood/oxygen to your heart and brain); or a combination of all of these things.

Will it happen again? No one can say.

Some of our biggest concerns are: what would have happened had Ryan not found him, why was he unresponsive for such a long period of time and what can we do to guard from this happening again? No one has any answers to these questions. The only thing Ron can try to control is his position/posture when he yaks; try not to get into such a compressed crouching position. He tried that this afternoon when he yakked and ended up pulling a muscle in his back....poor guy, feels he can't win for losing!

I have to confess, it would be very easy to give in to fear and never want to leave Ron alone, but this is what faith is all about isn't it? We can't spend our days living in fear, being consumed by the what if's of life. Jesus came that we might live an abundant, victorious life...He never said it would be easy.

"For every child of God defeats this evil world by trusting Christ to give the victory. And the ones who win this battle against the world are the ones who believe that Jesus is the Son of God." I John 5:5

Choosing to trust that God's strength is perfected through our trials,
Christie

From Streams in the Desert 2

"Weeping may endure for a night, but joy comes in the morning: Psalm 30:5

A.W. Dixon wrote: "It is better to have darkness with stars...than all sunshine and no stars"

"Any man can sing by day; but only he whose heart has been turned by the gracious hand of Jehovah can sing in the darkness...only the peace of God can give gladness in the darkness of adversity. God gives joy in sorrow; and when the sad one sings through his tears, then the Lord comes to him with new and more tender assurances....that which is born of trust rises in rapture" ~ Wm. M. Taylor

Overcoming fear of the unknown

2009-12-01T17:58:00.002-06:00

The last two days have been ones of hurry up and wait. Yesterday was busy with CT angiogram and small bowel follow through; while today, has been incredibly slow waiting on test results. On top of that we were thinking we would get to go home today, however, we are now waiting to have PICC replaced. Yes, his less than a month old PICC is not drawing so they want to replace it before sending him home. IR's schedule is incredibly full so they will not be able to get to him until 8 or 9 tonight. And seeing that he has to be monitored for at least 2 hours afterwords, he will have to stay another night.

The small bowel follow through looked markedly better from his most recent one in the spring, which is very good. The contrast made it's way through in a timely manner and motility looked much improved. Now, why does he continue to have the bloating and yakking? Quite the puzzlement, my hubby.

This afternoon we finally received results from CT angiogram and there is definitely something there, but it is undetermined as to what it is. It could be just a loop in a vessel, or it could be a small aneurysm, they can't tell. The neurologist, in consultation with Dr. A, decided to refer Ron's case to UT Southwestern. Presby will send the information over to UT Southwestern to be studied by their neuro team, which is supposed to be the best around. They will then, most likely, have him come in for further testing.

You'd think we'd be a little freaked out by all that's taken place over the last few days and now this possible diagnosis; but, honestly, we are doing very well. As we were discussing the possibility of these results, we wondered if all this other stuff happened just so we would have all these tests in order to find this possible aneurysm. Again, God always goes before us; and we're choosing to trust him for whatever the results may be.

This morning as I was reading a devotional I wasn't able to get to last week, it struck me how appropriate the timing was for today. I hope it ministers to you as much as it has to us.

Much love, Christie

Overcoming the Fear of the Unknown
20 Nov 2009
Micca Monda Campbell

"Then you will know which way to go, since you have never been this way before." Joshua 3:4a (NIV)

Do you have a fear of the unknown? If so, then you know how nerve-racking it can be. Fearing the unknown can cause us to live on pins and needles as we spend precious energy anticipating the worst-case scenario. There are two problems with this type of fear:

1. The future is not here.
2. The future is not ours.

While the future may be out of our hands, it's not out of the hands of an adequate and trustworthy God. When we face a worrisome unknown situation, we can look to Joshua as an example.

It's recorded in the first chapter of Joshua that before Moses died, God passed the baton of leadership to Joshua. The Israelites had been wandering in the desert for 40 years under the guidance of Moses. Now, their journey was almost over. Just beyond the Jordan River was their promised land—the land that God had guaranteed to Abraham and his descendants.

Upon reaching the Jordan River, Joshua and the Israelites set up camp by the stream and awaited God's direction. Much like their meeting with the Red Sea, God had to make a way for them to cross over the river. On the third day, God told the officers to instruct the people that when they saw the Ark of the Covenant (where God's Presence abided) to follow it because they had "never passed this way before" (Joshua 3:4). In essence God was saying, Follow Me and I'll see you through this unknown territory.

That's not all. The people were instructed on how closely they should follow the ark. Without this instruction, the people would have crowded the ark and God wanted every person to be able to see His presence ever faithfully leading them through the unknown valley. What greater encouragement could they have than this, that the Lord was their God, a God who was with them?

You see, friend, the Lord understands our fear of the unknown. He realizes that you may be in a situation that you've never passed through before and you're afraid. It may be the first time you've been without employment. Maybe you've just been diagnosed with an illness or your child is in rebellion. You've never been down this road before and you don't know which way to go or what to do. God will guide the way.

Joshua's life was unpredictable and full of unknowns much like yours and mine. Yet, he successfully resisted fear by keeping his focus on God rather than the events surrounding him. Just as God guided the Israelites through unknown territory, He will guide you and me too. When we come to a place we've never passed through before, God is always present to help us.

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God,the Holy One of Israel, your Savior; (Isaiah 43:2,3b, NIV).

Even though the children of Israel were not told how they would pass over the river, the people went forth in faith. We too can move forward in faith sharing in the promised presence of God leading the way through our unknown circumstances.

Dear Lord, thank You for Your promised presence. It comforts my heart to know that I am not alone. Lead me, Lord, through the unknown in my life. Make Your path clear and I will follow it. In Jesus' Name, Amen.

Related Resources:
Visit Micca's blog – Reflections

Today's devotion was taken from Micca's book, An Untroubled Heart: Finding Faith that is Stronger Than All Your Fears. Order your copy by clicking here.

Do You Know Him?

Application Steps:
The Bible calls us to walk by faith not by sight. God doesn't always give us the details we desire.

He does give us Himself. Believing is certainty that He's laid out a path and He goes before us.

Reflections:
Have you ever run from fear? Where and when?

Where did you find comfort from your fear?

How can God's promised presence soothe your fears?

Power Verses:
Psalm 32:8, "I will instruct you and teach you in the way you should go; I will counsel you and watch over you." (NIV)

Jeremiah 29:11, "'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" (NIV)

© 2009 by Micca Campbell. All rights reserved.

Sit still...

2009-11-29T22:28:00.001-06:00

Much-needed lazy day here at Presby. Last night was rough, Ron's IV seemed to be going off constantly...I was beginning to wonder if they had done it on purpose to evoke a seizure for the EEG!

Neurologist was in and said not all the data from the EEG had downloaded as yet, but what had, looks normal. He also said the MRI looked good, but the MRA of his brain showed what is either an artifact or could possibly be an aneurysm in the right front lobe of Ron's brain. From what I understand, an artifact is when you see something on an image that may not actually be there; could be a coil of vessels that take on the shape of something foreign or some other oddity. (Leave it to Ron to have this little phenomenon happen!) Given Ron's history of aneurysms, they feel it should be further examined, so he will be scheduled for a CT angiogram tomorrow.

I hadn't realized they were doing any MRA and didn't exactly know what it was, but now I know an MRA specifically produces images of blood vessels whereas an MRI produces images of organs, muscles, bones, nerves.

Ron is also to have a small bowel follow-through. Since both the CT angiogram and the small bowel follow-through require dye (contrast), which puts stress on the kidneys and he only has one; they aren't sure they will be able to do both on Monday. They will first check his kidney function from his early morning labs; if all looks well, they will try to schedule the CT angiogram first thing in the morning and small bowel follow-through later in the afternoon; in the meantime running alot of IV fluid through him. Obviously the CT angiogram takes precedence, if scheduling doesn't work that way, they will wait until Tuesday for small bowel test. So, no word as to when he'll be able to go home. We were told this afternoon he will also have to prove he can hold food down before being allowed to go home, therefore this evening's yakking was disappointing!

Whew, lot of technical stuff in this one! May be too much information, but as I always say; these e-mails are my therapy session...writing it out helps me get my head wrapped around what's going on.

By the way, this new information has absolutely nothing to do with what brought him here! Aye, aye aye...my unique husband! I call him my walking time bomb, never know what's going to go off next!

Please continue to pray for definitive answers and that we will be at rest as we wait.

As I was reading today, this verse and the commentary on it really spoke to me

"Sit still, my daughter, until you know how the matter will turn out.” Ruth 3:18

Waiting on God involves a time of testing.

Waiting on God assumes that God is working, with our best interest in mind.

When you must wait for God to work, what is the quality of your waiting time? Are you anxious, trying to make things work out, or are you resting in the better plan of God?

“Be still in the presence of the Lord and wait patiently for Him to act" Psalm 37:7

It's all good...

2009-11-28T22:53:00.000-06:00

Another busy day here at Presby!

The Cardiologist came by and said that Ron's echo/stress test looked good, no problems there. They will continue to keep him on the heart monitor through tonight though. Then neurologist was in to do an evaluation and ordered an MRI of his head and neck and also has set him up for a 24 hour EEG. I wish I was able to download the photos off my phone so you could see how he looks with all those probes coming out of his head, quite comical. He has to wear these continually for the next 24 hours. It also has a video monitor recording him...looking for any signs of seizures. And he's had a multitude of blood draws.

Ron is so ready to be out of here. It's been difficult to have to miss out on all the family activities of the weekend. On Friday, the family had a pool party celebrating Papa's 90th birthday with 27 family members scheduled to attend. Then today, we were all going to the Texas Tech/Baylor game at the new Cowboy Stadium.

Other than being tired he's feeling ok and thinks all the tests are unnecessary; so what, he just passed out and was unresponsive for about 1/2 an hour...what's the big deal? He'll just have to suck it up, though, because he'll be here at least until Monday.

Nothing else to report from here. Good night all!

Christie

Oh the Drama

2009-11-27T14:27:00.000-06:00

Lots of poking and prodding throughout the night/morning but thankfully Ron's been sleeping in between. He is responsive, cognitive, looks like CRUD, but, all things considered doing ok. Docs are fervently trying to figure out what exactly happened and, most importantly, why.

Only thing they've found thus far is that his potassium level was very elevated, though other electrolytes were fine. Elevated potassium can indicate heart problem, but his EKG looked good, and he's been on a heart monitor all night with no remarkable instances. Consult with cardiologist confers they don't think it's his heart, but they are doing a nuclear stress test (medically induced) to be doubly sure. We are down in nuclear medicine right now.

When Dr. A was in this morning Ron remembered after yakking and flushing last night, his body spasmed and muscles began drawing up into a fetal position and he could not stop it...next thing he knows; the paramedics were transporting him. In the ER he was experiencing tingling in his right arm and both legs, but moreso in the right.

These issues are definitely not the norm, but not unheard of in patients with adrenal insufficiency. There are also instances where heparin (the blood thinner he is on) will act as a steroid and cause adrenal issues to be exacerbated.

Thanks for your prayers, emails, posts and text messages. We're hanging tight, so thankful I'm able to stay in Ron's room with him. I also slept off and on as they were in and out (I actually think we had about a 1 1/2 hour stretch in there at some point and it was glorious!!!!) Aaron was able to go by the house and get the bag I keep packed for emergencies (note to self: packed bag goes with us anytime we leave the house; along with computer...my lifeline of communication!)

I've been able to have a hot shower, put on clean clothes and even a little makeup...you know the old saying, when you look good, you feel good! At least it's worth a try. And since Ron was not able to eat before the stress test, I ate his yummy lunch; so, yes, I am trying to take care of myself.

Sorry, I'm not able to have my phone on down here but will check for messages/texts when procedure is complete (they said it would take 1 1/2 - 2 hours for stress test).

So thankful for Dr. A and the awesome nurses/staff here at Presby. "Sometimes you wanna go, where everybody knows your name!" (as well as your extensive medical history!)

Christie

Much to be thankful for...

2009-11-27T03:43:00.001-06:00

Great Thanksgiving spent with family at Ryan and Stacee's. Good food, and very relaxing time.

That is until we found Ron passed out in the bathroom, unresponsive.

WARNING: Following details may be disturbing to some of you; use your own judgment as to whether to continue.

Evidently Ron had become ill and was in the bathroom yakking. At least the last thing he remembers is yakking, flushing the toilet and then the paramedics moving him onto the stretcher...we don't know what happened but we believe he was out for about 10 minutes before Ryan found him and was completely unresponsive another 10+ minutes after that, with the paramedics arriving shortly.

It was incredibly scary!! The bathroom is one of those little toilet rooms in the master; Ron was crouched over the toilet with his arms draped over the rim and his head hanging in the toilet; thank God it's one of those low water toilets or he would have drowned. He was white as a sheet, eyes rolled back and not responding to anything. Ryan had to crawl in there with him (Ron's body was keeping the doorway from opening more than a crack), sweep his throat, check his pulse and respiration's and hold his head in a more stable position while Aaron and Tony worked to get the door off it's hinges so they could remove it and get Ron fully laid out in order to do a more thorough assessment. Meanwhile, I'm on the phone with the 911 dispatcher (who was very calm, patient, and soothing).

EMS arrived quickly and we headed to Harris downtown. En route I was on the phone with our fabulous Dr. A who advised we were to go to a nearby hospital, let them run some tests and stabilize him, then transfer via ambulance to Presby for continuity of care.

PTL!!! Ron's CT revealed no signs of stroke, no signs of pulmonary embolism (blockage in artery to lung), lung x-ray looks a little sketchy but labs look ok. Once he was stable and initial tests were completed, he was transferred to Presby...arriving at 2:30 AM. Now tucked in for the "night"; with more tests to come.

Please pray, the entire family (as well as friends) have been pretty shaken up by this; especially those who were there and witnessed how bad things looked. And especially pray for definitive test results.

I'll update as I know details.
Christie

Giving Thanks

2009-11-22T13:08:00.004-06:00

I had an epiphany (I love this word!) this week. Now, some of you will probably think, well isn't she quick to catch on! But, what can I say...

Working in my flower beds, or long walks alone, are my best prayer times. There's just something about being outdoors; quiet, all alone, away from distractions, that clears my head and opens my heart and mind to my Father's words of wisdom and instruction.

As I was out on a walk the latter part of my week (no, I wasn't working in my flower beds...as much as they need some attention and no matter how much I enjoy it, the idea of more "work" was not something I wanted to consider), I was finally still enough and quiet enough to really hear God speak to me. Of course, He speaks more gently and with greater compassion, but what it boils down to is: we're idiots!

How foolish we've been; we really set ourselves up for disappointment. Ron has only been home a week from a 12 day hospital stay-with 4 of those being in Intensive Care-and is still recovering from a nasty case of pneumonia and here we've been so depressed over his lack of energy and motivation; as well as his overall despondency? Why is it taking him so long to get back to where he was previous to this episode? Not very realistic is it?

We are so used to these little hospital "visits" that we often overlook the ramifications. Typically, when you've had a hospital stay you are prepared for a 4 to 6 week recovery period, yet Ron's been in for so many "minor" things, hospital stays are just part of our routine, therefore, our mindset is warped. A couple of days in the hospital is a huge difference from 2 major procedures, 4 days in ICU, 2 minor procedures and a case of pneumonia!

We tend to see ourselves as one of those "bop bags" we had as kids, you knock 'em down and they pop right back up. Amazing that no matter how often he was punched, that scary clown always had a smile on his face!

Remember, though, after days or weeks of punching, he seemed to lose his "umph", becoming droopy and more reluctant to pop back up so quickly? Typically, all he required was a little extra air, other times a major patching was needed; so we called on someone wiser and more experienced for assistance. We're the same, we can't handle repeated knock-downs without the assistance of those who have gone before us, experienced the hard punches of life and are there to help us bounce back. Most importantly, we need to rely on the Holy Spirit to intercede on our behalf; He stands in the gap when we can't even muster up the strength to look up!

As I was reading this week in Psalm 107:22

"...offer sacrifices of thanksgiving and sing joyfully about His glorious acts"

these words from L.B. Cowman spoke to me:

"...a sacrifice of thanksgiving is to praise God when you don't feel like it; when you are depressed and despondent; when your life is covered with thick clouds..."

And I Thessalonians 5:18 says:

"Give thanks in all circumstances, for this is God's will for you..."

Notice, it doesn't say FOR all things but IN all things; yet we can be certain God has a plan IN all things FOR all things!

A plethora (my other favorite word I hardly ever get to use!) of lessons here:
* the more times we get knocked down, the slower we are to get up
* the importance of calling on our Father when we need "inflation"
* we need each other
* why so many kids are afraid of clowns -- no matter how hard you try to push him away, he jumps right back at you with that maniacal smile...just like that clown jack-in-the-box! (Ok, not so spiritual, but am I right?!)

Hmmm, what an appropriate epiphany (there's that fun word again!) as we go into this week of Thanksgiving. We are to offer praise no matter the "season" of our life. As I'm often reminded (when I get still enough to listen), our internal well-being should not be dependent on our external circumstances. Elementary lessons of our faith, but sometimes the most easily forgotten!

As you approach this Thanksgiving season, reflect on all you have to be thankful for; yet don't overlook the importance of offering praise even during the difficult times of life when you just don't feel like it!

Giving thanks with a grateful heart with YOU in mind!