Sunday, June 29, 2008

Same ol', same ol'

Days around here have been pretty routine. Ron completed his antibiotics on Friday night. He's gained about 10 pounds of fluid weight over a week's time so his legs are pretty puffed up again. They did a doppler on his legs yesterday to make sure no more blood clots have formed. Good news, not only are there no new ones, but the existing ones are actually slightly smaller! Thank you, God! The delicate balance of fluids and blood pressure are maddening, if they give extra fluid he swells up; if his fluid level gets low, it causes his blood pressure to drop too low!

Tomorrow, he goes for Interventional Radiology for a fistula-gram (check on leak size) and most likely a CT scan. Dr. Liddell (infectious disease) wants to watch him for 48 hours and then, if all goes well, we will once again go home (Wednesday).

Please pray for Ron. He's been a bit melancholy lately; so ready for this to be behind him. Sometimes, it seems it will never end and as we realize it will be July in 2 days; he's having thoughts of how much stuff he's had to sit out on over this last year. As well as the fact that, even though we may go home; it's still not over. He'll continue to deal with tubes and TPN, trips back to Presby for Interventional Radiology, all the record keeping of input, output, blood pressure and weight to monitor fluid level, Lovenox and steroid shots and still be unable to have anything other than ice chips. He is very mindful of how gracious God has been in sparing his life and bringing him this far. But it's just so HARD to have this going on and on with seemingly no end in sight! It's all in God's timing; there is nothing anyone can do, just wait for his body to heal.

I can't imagine how he feels; yes, it's hard on me but I have the luxury of walking away every so often and, for a while, having a semblance of a "normal" life. I'm in awe of how he handles it day after day...and so very proud of him and humbled to be his wife!

Regardless, God is always good; always faithful to give us exactly what we need when we need it. As I was reading yesterday morning my devotional was perfect! A verse we've heard over and over and yet He reveals something new.

"Summon YOUR power, O GOD; show us YOUR strength as YOU have in the past." Psalm 68:28

The LORD imparts to me the underlying strength of character that gives me the necessary energy and decision-making ability to live my life.... And the strength He gives is continuous; a source of power I cannot exhaust.

"The LORD is my strength" (Exodus 15:2) to go on...He gives me the power to walk the long, straight, and level path, even when the monotonous way has no turns or curves offering pleasant surprises and when my spirit is depressed with the terrible drudgery.

"The LORD is my strength" to go up. He is my power to climb the straight and narrow path up the Hill of Difficulty...and not be afraid.

"The LORD is my strength" to go down. It is often once I leave the invigorating heights, where the wind and sunlight have surrounded me, and begin to descend to the more confining, humid and stifling heat of the valley below that my heart grows faint....

"The LORD is my strength" to sit still. And what a difficult accomplishment this is! ..... To do nothing except to sit still and wait requires tremendous strength!

"The LORD is my strength!"

"Our competence comes from GOD" (2 Corinthians 3:5)

Tuesday, June 24, 2008

Ask and you shall receive....but only if you ask nicely!

OK...I've received several complaints about the lack of updates and it's only been 4 days! You guys have gotten way too spoiled!

Things have been quiet around here. Other than continued episodes of clamminess/ cold sweats Ron has been feeling well. He was able to visit with several family members over the weekend: his Mom & Dad were here Friday evening with all of our kids, my Dad was here Saturday, our niece, Whitney, and her new fiance, Jorden, came up Saturday afternoon to share their engagement video with us, and Aaron & Kristin came up Sunday afternoon.

Monday, Ron went to Interventional Radiology so they could check to see how the infection at the g-tube tract was responding to antibiotics. Dr. Dittman (Interventional Radiologist) said there was still some inflammation but definitely much improved. They also did a fistula-gram while he was down there and Dittman said fistula is getting smaller each time, basically the size of a mechanical pencil lead. No talk yet as to when he goes back for drainage tube manipulation, though. Dr. Liddell (infectious disease) was pleased with the way the g-tube looked, but says he will remain on antibiotics until Sunday; anti-fungal cycle ends Saturday.

Tomorrow, Wednesday, he will go back to Interventional Radiology to have his PICC line changed.

No serious talk of going home again. We know he will remain here for at least a couple of days after the antibiotics and anti-fungal have run their course to watch for any relapse; that puts us into next week, Tuesday or Wednesday.

He has put on some weight from fluids. They upped the amount of fluid in his TPN since his blood pressure was trending on the low side. BP is back up to normal but now we battle the balance of too much fluid leaching into the tissue causing swelling and weight gain.

When I came in Sunday morning he was excited to tell me he was able to sleep on his side for a short period. It's been over 8 months of being flat on his back any time he's in bed (other than having to be positioned propped with pillows underneath one side or the other to prevent bed sores when he was unable to move much). All the various tubes over time have really hindered his ability to get in any other position.

That's the news from here. I'll try to update more often....but keep in mind, no news is good news or, as Dr. Elieson used to always remind us, "any day that's not a bad day is a good day".

"Now it is required that those who have been given a trust must prove faithful."
I Corinthians 4:2

Friday, June 20, 2008

Hunka hunka burnin' love...

Once again, Ron spiked a 102.3 temp last night. I'm so thankful he was scheduled for Interventional Radiology this morning. He had been experiencing quite a bit of discomfort in his chest around his g-tube the last couple of days; along with some shortness of breath when he walked because of the pain in the g-tube, and had required more pain meds in the last two or three days than he has needed in a while. He assumed it was because the g-tube was a little out of position, but they discovered he actually has an infection in the g-tube tract. They replaced the g-tube and contacted Dr. Liddell (Infectious Disease doc).

After Dr. Liddell saw him this afternoon, she put him on two different antibiotics (and will also continue with the anti-fungal). She decided she wanted a chest x-ray done as well which they did this evening but we have not received any results as yet. He will go back down to IR on Monday to have the g-tube looked at again. He will also go to IR Wednesday to have his PICC line replaced.

They were able to downsize and draw back some on his drain tube; which means the fistula continues to get smaller! YIPPEE!!!

He is still running a low grade fever tonight but is feeling much better. They've had to tweak his steroid some, he has been having some cold sweats. At first they thought it was drop in blood sugar but each time they checked, things were fine. Before going home last week, they had changed his steroid to an intra-muscular injection (since he would not have an IV) and went from 25 twice a day to 50 once a day. When he came back to the hospital they started giving it through IV again to avoid at least one painful shot. Problem is; the body does not disperse it as well intravenously as it does when it is intra-muscular (like a timed release.) IV administration was causing his level of steroid to peak more quickly. Now, they are back to 25 twice a day through IV; hopefully this will get rid of the cold sweats.

Have a great weekend!

"Grain must be ground to make bread." Isaiah 28:28

...being a blessing of His often requires sorrow on our part. Yet even sorrow is not too high a price to pay for the privilege of touching other lives...the things that are most precious to us today have come to us through tears and pain.
~ J.R. Miller

To burn brightly our lives must first experience the flame.

Wednesday, June 18, 2008

He's a fun-gi!

Well, I've always known I was married to a "fun-gi" and yesterday we found out officially, there is once again a "fungus among us!" (Sorry, I just couldn't help myself!)

Yes, his PICC line was harboring a fungal infection, which is what Dr. Liddell had suspected all along. He is back on the anti-fungal for 14 days and they will change out his PICC line again when he's had about 10 days of it...long enough to have cleared up majority of the infection but also have enough medication left to lessen the chance of new line getting infected.

He has several things going against him to heighten his risk of re-infection: TPN--the high fat content is a breeding ground; the steroids; multiple entryways (the holes where drainage tube and g-tube goes through skin as well as the plastic tubes themselves being breeding grounds) and he's already had a fungal infection (actually two now).

We know for sure we are here for at least another week and most likely longer. Other than that, things seem to be rockin' along pretty well. He will have Interventional Radiology either Friday or Monday at which time they will downsize his drain tube and reposition his g-tube which has gotten slightly out of position...still functioning ok but not in optimal position. Heather (wound care) looked at wound site yesterday and says it continues to heal well and is almost completely closed.

Love you all!
Christie

Psalm 62:5 "My hope comes from Him."

Delayed answers to prayer are not only trials of faith; they also give us opportunities to honor God through our steadfast confidence in Him even when facing the apparent denial of our request. Charles H. Spurgeon

Sunday, June 15, 2008

Bounce back & Father's Day

We got home around 1PM Friday afternoon and yes it was good to be there, but I already had to take a nap! It's hard work (and stressful!) having to get all the medical equipment delivered and set up, do all the injections, drain flushes, mix and hook up TPN, and everything else on my own!!!

Unfortunately, our time home was short-lived. We didn't even make it 12 hours this round! BUMMER!!!

Ron seemed to be doing well but when I went to do his end of night flushes and Lovenox shot at 10:00 PM, I noticed he felt really warm. He said he felt fine, just a little headache but I took his temp anyways and it was 102.4. We were both rather surprised so decided to wait 10 minutes and take it again; this time it registered 102.7; at which point I decided maybe I should try another thermometer just to make sure. It took a little while to find another thermometer and when I finally took temp it came up at 103! I once more took it with the first thermometer and it was still 103! It has now been an hour so I called Dr. Shires number. Dr. Shires is gone for a few days but one of his partner's, Dr. Hagood, immediately returned my call and said because Ron's is such a complicated case, we needed to get to the emergency room. Of course, throughout this time I'm thinking...why did I not think to have them prescribe Tylenol suppository when we discharged from hospital to keep on hand??? (since he cannot take anything orally and you can't put anything in through TPN line, it's the only way feasible). Ron was insistent he did not want to go to ER and was wanting me to call the doctor back to see if there was anything else we could do! Obviously, I vetoed that idea!

After packing up a few days worth of clothes, toiletries, laptop and phones, I got Ron settled in the truck with an ice pack on the back of his neck, a cold wash rag on his forehead and a lollipop to make the ride a little easier.

Oh, what a night it was! We arrived at the ER at 12:15. They took him back to a room around 12:40 and then we began the process of recounting his medical history...ALL of it; first to the nurse then to the doctor. Of course, they felt it's most likely related to his most current hospitalization but must have everything to make concrete decisions. They did 3 rounds of blood tests, a urinalysis, CT, and chest X-ray. The CT showed no signs of abscess, chest x-ray looked fine, but urine showed signs of being a little dehydrated and his blood work showed a rather elevated white blood cell count and elevated creatanine (kidney levels) . His blood pressure was staying in the low 80's over low 50's and heart rate in the 120's which are other indicators of dehydration. They gave him 2 boluses of IV fluid (run bag of IV fluid into him at a very fast rate) and finally moved him to a room about 9AM. (Some of the waiting was for shift change to take place so they would have more staff on 6 West to be able to get him in a room up there). We were both exhausted!!!!

I must have looked especially lovely since every nurse/tech/doctor we encountered on 6 West said "Christie, you need to go get some rest!"

We dozed off and on throughout the day between doctor's visits and nurse's and techs doing their things. Dr. Liddell (infectious disease), Dr. Hagood (Shires partner) and Dr. Lee (Dr. Arslanlar's--GI-- partner) all came to see him throughout the day. Feeling was, PICC line must be the culprit. They also put him back on the anti-fungal since that's most likely the type of infection since it is hard to get rid of and very susceptible when on long term TPN. I finally left to get a very late lunch/early dinner and shower (yes, I was in the same clothes I'd been in since Friday morning and it is now Saturday evening!) and of course they came to take him to IR to have PICC changed.

They were so sweet last night to make sure all his meds, shots, blood sugar, vitals, etc were done at 11PM with instructions not to wake him until 5AM when blood draws are done.

Hallelujah, Hotel Presby was not booked...my same room was still open!...so I was able to get a much better night's sleep, too.

Today, he has had no fever and his white blood cell count has gone down quite a bit. BP is still slightly low but not too bad and not needing any intervention. He's feeling pretty good and has enjoyed spending Father's Day watching the US Open. All the kids came up so we had a good visit while Ron enjoyed opening all his cards and gifts. We, except Ron :( enjoyed yummy desserts R&S brought back from their engagement party in Florida. A&K had to leave early afternoon to head to Abilene for the night and then they will head to Lubbock for a couple of days.

Tomorrow, Ron goes back to Interventional Radiology for another scheduled fistula-gram. Hope is to downsize drainage tube again.

Prayer requests:
RESTORATIVE SLEEP! Still trying to get caught up after pulling the ER all-nighter
Tomorrow's fistula-gram
Definitive answers from blood cultures
A&K as they travel and seek God's wisdom

Good night! I'll try to send an update tomorrow after Interventional Radiology!

Love, Christie

My devotional that day was especially appropriate as I was able to share it with Ron when we were traveling back to Presbyterian Friday night.

"My peace I give you." John 14:27

Two painters were once asked to paint a picture illustrating his own idea of rest. The first chose for his scene a quiet, lonely lake, nestled among mountains far away. The second painted a thundering waterfall. Beneath the falls grew a fragile birch tree, bending over the foam. On its branches, nearly wet with the spray from the falls, sat a robin on its nest.

The first painting was simply a picture of stagnation and inactivity. The second, however, depicted rest.

Rest is not some...feeling that comes upon us.... It is a state of calm rising from a heart deeply and firmly established in God.

Henry Drummond

Tuesday, June 10, 2008

Goin' to the Chapel....

Mark your calendars!!!

It's official....the church, reception, and rehearsal dinner sites have all been reserved (as well as the honeymoon spot!). The bridal gown and invitations have been purchased and they're buzzing along on all the other details!

The big day is: Saturday, November 8, here at our home church, North Richland Hills Baptist!

Look forward to celebrating this very special day with you!!!

Downsized

Ron went for CT and Interventional Radiology late yesterday afternoon. They are pleased the fistula continues to get smaller so they downsized his drain tube. It's still a long process of waiting for things to dry out and slow continuation of downsizing. Once it has finally healed over, they will take the tube out and then wait 7-10 days (or more) before they will start introducing fluids. Now that he has completed the anti-fungal, they have decided he can go home again! Plans are in motion to discharge Thursday or Friday of this week....yes, that's basically one day left here at Presbyterian Hospital!

He will continue to have the g-tube on suction so we'll have to get the lovely Gomco again that will follow him from room to room and he will remain on 24 hour TPN; no more messing with cyclical since he tends to get dehydrated so easily. They will teach me how to give him his Lovenox shots (blood thinner that goes in his belly/side, wherever we can find some fat. HMMM, fat on someone who hasn't eaten since October? That will definitely be a challenge!) I will also have to give his steroid shot (for the adrenal dysfunction). We think the plan is to take the wound vac off but will find out for sure tomorrow when wound care nurse comes for regularly scheduled vac change. Of course, all of this is subject to change if anything comes up.

He will have CT scan and Interventional Radiology on a weekly basis (looks like scheduled for Monday's). Dr. Shires also says not to be surprised if he has to be re-admitted at some point but he feels the benefits of being home for a while outweigh the possibility of coming back.

Please pray for smooth transition. Great to think we could be home for Father's Day!

Thank you for your continued prayers; especially for Aaron & Kristin as they travel this weekend to spend time with Kristin's parents and as they seek discernment; and Ryan & Stacee as they travel to Florida to spend some time with Stacee's parents and as they plan the wedding.

Love, Christie

"We know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

Not in some things or most things but in ALL things; from the smallest detail to the most important; from the most humbling of daily tasks to God's greatest works of grace performed during a crisis!

Note it says "works"; present tense; not "worked" or "will work"; God's work in our life is on-going!

"The Lord is righteous in all His ways and loving toward all He has made." Psalm 145:17

"You do not realize now what I am doing, but later you will understand." John 13:7

Streams in the Desert

Thursday, June 5, 2008

Field Trip!

Tuesday's CT and IR showed things continue to slowly look smaller and better. He'll go back first part of next week at which time they will downsize to a smaller tube. They did have to replace his g-tube because his night nurse had crushed the hard plastic tip of it the night before as he clamped it off after administering contrast. And, believe it or not, he has had NO fever since procedure...a rarity these days!

Today, we spent almost 3 hours on a little field trip to the ophthalmologist.Since they need all of their specialized machines he had to go to them (by way of wheelchair). Dr. Burk's office is in Professional Building 3 which is connected to Presbyterian Hospital through a maze of hallways and a sky bridge.

You know how it is in an ophthalmologist's office, fill out all the required paperwork, (filling out Ron's medical history and surgeries is like writing a novel); sit in waiting area, go to one room for this machine, another room for that machine, wait in another small area to be called back to actually see the doctor. They numbed his eyes twice (for two different tests), dilated them and did every test imaginable. And those great little backless stools you have to sit in so you can put your chin and forehead in the right position for each thing; oh so comfortable! Add to that the fact we were wrestling an IV pool with it's various machines and lines! We were both exhausted by the time we made it back over here!

His eyes look great; no signs of fungemia (fungal infection) there! And he continues to have 20/20 vision, only needing the help of reading glasses. He will continue on the anti-fungal until Sunday when his 2 week course is complete.

His liver function and all other numbers they look at to adjust his TPN has been great for the last couple of weeks. Since everything is going in a positive direction, they are once again talking about sending us home, maybe end of next week barring anything else coming up! First, they'll watch him for a couple of days after he's off the anti-fungal to make sure it's cleared up as well as keeping an eye on him after next IR; since they will be manipulating drain they want to make sure they don't stir anything up that causes him to run fever or get infection.

I think that's all the news for now! Other than wound vac change tomorrow, we should be in for a quiet weekend! Hope you enjoy your weekend as well!

Please continue to pray for Aaron and Kristin as they have a possible opportunity available. Pray that if this is God's plan that it would be very clear that He has gone before them and prepared the way.

And for Ryan and Stacee as they try to make some final decisions on the "big" stuff concerning the wedding.

Monday, June 2, 2008

How do you do it? God is faithful!

Now that school is out and I have a little more time, I'm hoping to share some thoughts on all that's been going on over these last (almost) 8 months.

Many of you have said to us "How do you do it? I could never go through all that you're going through..." I can assure you, it's not us! If we were trying to do this in our own strength, we'd have given up long ago! But, God is faithful to equip each of us to walk the path He lays before us! Our part is to submit to Him.

As I was reading this morning, my devotional seemed especially fitting to share.

"Against all hope, Abraham in hope believed...without weakening in his faith"
Romans 4:18-19

George Mueller once said "The only way to know strong faith is to endure great trials. I have learned my faith by standing firm through severe testings." How true this is! You must trust when all else fails. If you are enduring great afflictions right now, you are at the source of the strongest faith. God will teach you during these dark hours to have the most powerful bond to His throne you could ever know, if you will only submit.
"Don't be afraid; just believe." Mark 5:36
Great faith must first endure great trials.
God's greatest gifts come through great pain.

Sunday, June 1, 2008

June?

Wow! Can you believe it's June 1st??? As I turned my calendar to the new month I saw I still had written for June 2 "Ron's BIG Surgery". When we went home for the first time in March, tentative surgery date had been scheduled for June 2, since that would be the first week I was out of school. And here it is June 1 and we are 6 weeks post op!

I've been looking back at old e-mails--beginning October 8th when we first went to the ER with pain, vomitting and dehydration. Since that date, Ron has been home 3 times (October 15-18; March 14-18; April 1-8) for a total of 14 days. And now, here it is 1 week shy of 8 months! Doesn't seem possible.

But, things have been going well the last couple of days. Dr. Shires even said yesterday that he is pumped! Drain output has decreased dramatically which means two things: the fistula (leak) is healing and his body is beginning to absorb the gastric juices naturally. He goes for another fistulagram and CT scan Tuesday (along with wound vac change). Dr. Shires also said he's going to be extremely slow about the next steps (clamping off g-tube and then feeding) reminding us again, Ron is never normal so they can't treat him as they typically would others.

Please continue to pray that God will make His timing evident as they once again begin to talk about sending Ron home.

Also, please be in prayer for our kids:
Ryan and Stacee as they plan their wedding while working full time (tentative date Nov 8)
Aaron and Kristin as they make some decisions regarding their future

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...