Thursday, November 18, 2010

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 or 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.


X said...

Praying for Y'all. My daughter has a kidney disorder and a g-tube, so I'm familiar with some of your day-to-day. I cannot imagine being in your shoes right now though. May God grant you peace and may His will be done. ((hugs)) Jen

Martha said...

May God's peace be with you. Praying for all of you.


Kasey said...

First of all I want to say you are a blessing from God above to that lil boy...second Happy Thanksgiving, my name is Kasey I am a mother of a wonderful 3 1/2 yr old named Joshua who was born with gastroschisis also...I am a part of Avery's Angels and wanted to make sure that you know if we can help, if we can listen, if we can do anything for you please don not hesitate to ask...just post on our page, email me back...we have been through this, some of our members have had more health issues than others but we can all help in our own ways..keep your heads held high and keep your prayers to God...please let us know if we can be of help..God bless...Kasey or Kasey Nicole Butler on Facebook

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