Saturday, January 28, 2012

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

Sunday, January 22, 2012

Ahhh, the good life!



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!

Friday, January 20, 2012

Beautiful day in the neighborhood!


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

Wednesday, January 18, 2012

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

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


Tuesday, January 17, 2012

Good News

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, January 16, 2012

Monday 1/16/2012

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, January 15, 2012

Sunday's update from Presby!

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

Saturday, January 14, 2012

Best medicine anyone could ever ask for!


Papa had some special visitors brighten his day.

Busy day here at Presby!

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?!?

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

Saturday, January 7, 2012

New Year, same old story

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.

It's here!!! Ron tells his story

Love it when my hubby shares!. Though a very condensed version, Ron eloquently shared with our youth group a few weeks ago. Below are his th...