A Fight For Life

Many are following John's progress on Facebook or through email groups or friends or family, John has a huge battle to fight to stay in this life, his lungs and heart are being compressed by the fluid that is building up in his body because of sepsis (bacteria infection in the blood), his body is trying to adapt to new organs and new medicines and all this at the same time. Surrounding him is an amazing team of doctors and nurses, they work with efficiency and care and often we can tell by the speed of their hands or the relief in their faces if the battle is going forward a few steps or taking a few back. John has now been in surgery 3 times and while we think that is the last we are not sure, he is in a fight for his life. More than the medical team surrounds John though, there is what the pastor who visited us today called the A Team, the pastors, friends, family, friends of friends and people from everywhere praying for John, praying for these doctors and nurses and praying and supporting us as we sit by John's side, holding on each minute to the promises given in John's baptism and hoping with all our hearts that we see him once more zooming around the place in his power chair with that silly little mischievous grin on his face and the light of love and glee in his eyes.

John has been in this fight since he was born prematurely at 33 weeks with a gastroschisis (intestines outside of body). I met him in New Orleans Children's Hospital when he was just hours old and Mark met him the next day when he was barely over a day. Already we were being told that John would not survive, for see in surgery to repair the gastroschsis on day one of life the diagnosed him with Prune Belly Syndrome, a birth defect that affects kidneys and ureters and left him with no stomach muscles, and in the repair they had to remove enough of his intestines that he was left with Short Bowel Syndrome, not enough small intestine to absorb enough nutrients to live. Along with his bowel just being short because of his birth defects it also functioned poorly, had weak walls that didn't squeeze properly and dilated easily to let things grow that shouldn't live in there. Because of these problems he was given a g-tube (tube that feeds directly into the stomach from outside the body) and a central line (permanent catheter that is placed under the clavical and runs into the heart) and placed on TPN (IV nutrition). TPN is very much a double edged sword, while it can keep a person alive and growing for a whole lifetime it more often causes liver damage and can only be sustained for a few years before the liver begins to fail. John's liver started out with some undiagnosable fibrotic issues, meaning that it is stiff and not as pliable and elastic as it should be, which makes it less able to handle TPN.

Despite dire predictions of immanent death John's kidneys began to function, they were shut down at birth, and he was moved from the NICU to the floor at 30 days. He had a second surgery to attempt to make the bowel function better when he was nearly 2 months old and was then flown to St. Louis at 11 weeks old and came home at 12 weeks old. John was rather well for the first several months at home, which was a good thing because we had a huge learning curve of how to care for him. We realized early on that while many think that knowledge is power, in the life of a medically fragile child knowledge is freedom and to be set free of other people schedules we had to learn to care for John ourselves. It was scary to change his central line dressing the first time and when he got his first central line infection at about 8 months old I was overwhelmed thinking that I had done it wrong and in effect killed him. He got better and they explained to me that John's gut was so weak that bacteria transmigrated his gut wall and because the central line is a foreign body it gets coated with platelets and such and then the bacteria just love to cling there and grow. This information was a great comfort for about 5 minutes and very little as we watched John fight one central line infection after another, and twice came very close to losing him to sepsis because he had just gotten so very sick.

Because the central line infections were so damaging to his body his liver enlarged to the point that the tip of it was in his pelvis, his skin was shiny yellow and his eyes had passed yellow and were beginning to turn green. At this point his docs decided that it was too dangerous to keep him on tpn and removed both it and the offending line. John lost weight every month when we took him to clinic, he was always small but was becoming bony and finally a few months in stopped losing but then couldn't gain at all. Eventually he became so weak from this that no amount of g-tube feeds (formula pumped straight into his stomach) or food or drink was making any difference what so ever and when he came to Omaha at nearly 4 years old he barely weighed 19 pounds, was so weak that he had difficulty holding up his head and was immediately diagnosed with 'failure to thrive' a word that strikes terror into the heart of a mommy and daddy.

Here the first thing they did was put in another central line, by this time we had lost count of how many he had had, but we were definitely scared of this one. With the addition of TPN he was gaining weight and getting stronger and soon was ready for a bowel lengthening procedure called STEP. Not too terribly long after that he got to go home and soon was off TPN again and without a central line again. Of course there had been a few infections along the way. This time he did not lose weight, but he also did not gain it and so effectively sat still for months on end and finally had to have another line placed and go back on TPN. A second STEP procedure still would not alleviate the issues with tube feedings and again eventually John was fully dependent on TPN. Infections came, not as often but still bacteria and fungus that was increasingly scary and everyone was holding their breath for the one infection for which no antibiotic would work.

Finally in January of this year John was evaluated for transplant. Mark and I were both terrified of this, but at some point the only option is try transplant or say good-bye and there is just no way that we could not try. It was determined that before a transplant was even attempted John should have his ureter reflux fixed. John's right ureter (takes urine from the kidney to the bladder) was so dilated and ineffective that he had grade 5 reflux, basically urine traveled both ways with ease. He also had a huge pocket on the top of his bladder which would let bacteria get in there and grow. John had both of these repaired in February of this year and remained central line infection free until here just recently, it was amazing. He was still TPN dependent but at least he wasn't fighting infections all the time and so we thought all was well.

Sadly John's liver had just had enough and he developed portal hypertension, basically a liver that is just not letting blood through right so it backs up everywhere and causes bleeding easily. At the same time John's bowel could not handle a medicine change and so started to bleed and it became evident that transplant was finally the only option on the table. John was listed for a liver, small bowel, pancreas transplant on Wednesday, November 3rd. Our prayer was that God's will be done, knowing that this transplant had to come from a donor who had died and was a similar size we could not fathom praying anything other than Thy Will Be Done and that the family of the donor child was having a wonderful day full of beautiful memories.

John was transplanted on Monday, November 15th and has now been in surgery twice since. He is currently on a ventilator with a chest tube in and probably starting on dialysis tomorrow. He is literally in a fight for his life, his eternal life is secure, each time we are able to fall asleep it is with the comfort of his baptism and eternal salvation that we wrap ourselves in and a prayer that he will fight for one more day. You are welcome to watch John's fight through the many miracles of modern technology, Mark C. Hass or Ageena Deneen Hass on Facebook, this blog, email 3wyrms@sbcglobal.net or pastorhass@sbcglobal.net or of course we have text and phones and that old fashioned thing called snail mail. Please though dear friends don't let yourselves become paralyzed by the day to day trauma of this, John's fight is going to have steps forward and steps backwards, we will spend moments in abject terror and tears that we are losing him and other with sighs of relief and thanks be to God on our lips, but always through both scary moments and good moments we will be holding tight to the promises of Christ that John is safe in His arms and that we and you are too.

God bless you and thank you for praying for our little boy, for in the end despite all these medical issues and the current fight for life we are talking about a little boy. An amazing little boy with a smile that can melt the coldest heart and a level of curiosity and mischief that can turn even the most innocent of things into an adventure. We are privileged and honored to be his parents and to sit by his bed this night and hopefully chase his chair down the hall in days to come, we are honored that you would sit here with us.

one more night

Gina and Mark had another scare last night. The lab number were not looking for the new liver. The prospect that the newly transplanted liver would not be able to work is the dark road. Every hope was looking towards the numbers that would come from his lab that would be taken at midnight. There were many people waiting for this following text from Gina:

"Lab results are in, he is still in very serious condition but there is reason to hope that this is not primary graft failure or game over time :) Now of course the fatigue has totally set in and we are actually both going to go lay down for a bit, the nurse is amazing and so are you."

The term that Gina used, primary graft failure, mean that the liver would not work for John and the would have to get a new one. FAST

signed The Lutheranhen, aka the friend in NE.

Another surgery

John's next surgery to clean and remove the packing is set for Noon tomorrow, but we are on hospital time which means it will happen tomorrow at some point probably mid day



I was in the hospital today with Gina, Mark and John. Again their were feed real food and we laughed and cried together. John is still a fragile shell of the boy that I have seen in the past. His life is in a balance that none of our minds can even begin to understand.

We pray that God would let this little boy live another hour, hour, hour, hour, and build up to 24. Then we pray for another day.

Please pray for this little boy tonight. Pray for his parents. When dark our hour and heavy our hearts Christ strength is ours. Lord Have Mercy

transplant

from the Nebraska friend while Gina and Mark are waiting for John to get out of surgery.

Yesterday morning they received a call saying that there were organs ready for John again. The surgery began at about 9:30pm last night. This morning things are still touch and go with little John. The new liver was not working and a second surgery is needed. His little body went into shock early this morning and he had lost 2 units of blood. Keep this little boy in your prayers. Pray that God's gracious will be done. May our Heavenly Father give the nurses and doctors wisdom while working on John. May He grant Gina and Mark peace and understanding.

In the hospital out than in again

Gina has asked me to post information on her blog. They had traveled to Omaha Wednesday night. John was going to have his transplant surgery in the morning. On Thursday morning after John was prepped for the surgery, they found out that the organs that John was going to receive were damaged and could not be used. I came up to the hospital and sat and visited with them. They were then planing on staying with me and my family tonight (thursday). God had other things in mind. While Gina and I were enjoying a cup coffee and laughing, she received a phone call from Omaha. John's blood cultures turned out to be gram positive which means that he has a bacteria infection in his blood. They had the choice of being admitted into the hospital in Omaha or driving back Columbia Children's Hospital. As I type this they are driving back to MO and John will be hospitalized in Columbia for at least four days. Now this is just a guess from me and I am not a nurse nor do I pretend to be. I am just a friend that tries to be a friend to Gina, Mark and John.

signed Lutheranhen (the Nebraska friend)

Now And Not Yet

John was prepped, tested and ready for surgery, even knocked out but after inspection the doctors determined that the organs were too damaged for transplant. So John was woke up and we are on our way home with the advice by do s to keep our bags packed and be ready again soon. Thank you for your continued prayers and I will update more as soon as I can.

Home Again...Home Again

John is home!!!! We are in extremely slow motion here, catching up on rest and such, but ever so glad to just be home :)

While in the hospital John got a chance to meet the new physical therapist and work with her some, he is learning to walk with crutches...



...and will get his very own pair of blue crutches when he returns for his outpatient appointment. He also got to work with the occupational therapist who we knew a couple years ago, and I had completely forgotten how much he had changed in that time until she and I got to talking about it. We look forward to working with (John calls it playing) with these nice ladies and helping John get further down the road of independence :)

Part of that is some new seating and such for his power chair, he grew out of his current seat and is in need of both a new seat and new foot plate so that he can learn to get in and out by himself, a thing that was not even a possibility when he first got the chair.

Aside from just the medical care that he needed one big important thing happened for John at the hospital, a remembering of how much he likes the nurses and doctors and how much they love him. By the time it was time to go he was calling his nurse, friend nurse, and was happy to go and visit with the doctors, one of whom gave him her watch and before we came home showed him that she had another that matched it so now they match. It's been a long time since we were in the hospital, and now with John active on the transplant list it could be a long or short time but another time is inevitable and that one will be a very extended stay. I am sad that it will not be with these nurses and doctors, but they have paved the way for John to be better able to adjust and adapt to new ones and to remember the ones in Omaha that he loves there too. There is no way to say enough good things about the staff at University Women and Children's in Columbia, everyone from our favorite cleaning lady, to the others who clean up, the people who serve food, the nurses, the doctors, the therapists, the Child life ladies and the people who work the desk and let us escape out the doors make it a patient centered, even a family centered place, where the child is seen as a whole beautiful little person and the staff become like part of the family. We're glad to be home, but we look forward to coming back to visit our friends, just to visit though :)