I'm not even sure where to begin this post -- so much to say. I guess I'll start with an update on Gavin's inability to tolerate anything in his gut -- nothing has changed. We had the J tube looked at and replaced. Everything was in the right spot and even with the new tube place Gavin retched as they flushed to check placement. We were really hoping it would be an easy fix but sadly we were wrong.
Gavin is now growing fungus in both lumans of his central line and we will need to be admitted in the next day or so. If Gavin is still not showing signs of sepsis we will attempt to lock his lumans with Amphoteracin as well as treat the systemic infection with the Ampho as well. If he is looking at all like he might be headed down a bad path we will pull the line and replace it with a temporary femoral line.
Yesterday we had our big appointment with the Mitochondrial Disease Specialist, Dr. Schoffner from Atlanta. We were really hoping that he would be able to offer some assistance but sadly he painted a very grim picture of Gavin's future. He spent some time asking us how we thought "it" would go, which made it a little easier to discuss. Everyone in the room agreed that at this point there really is nothing more that can be done for Gavin. His disease is very progressed. We were told that at this point anyone of these infections could be one Gavin will not be able to recover from. Our selection of antibiotics is narrowing as Gavin's gut bacteria have become resistant to some of the most common antibiotics. We talked about transplant and Dr. Schoffner strongly agreed with our decisions against an intestinal transplant. Gavin was sick before he went into intestinal failure so the root issue would not be cured. This was very comforting to Adam and I -- to hear someone whole heartedly agree with what we fell is best for Gavin. Dr. Schoffner recommended stopping all attempts at enteral feeding as he feels Gavin's gut will not get any better and the more we push in the more bacteria will be pushed out. He compared Gavin to a "leaky dike." --- nice huh? :)
Despite everything we were told it is so hard to think about the end. We still look at Gavin, and at times, we see a beautiful healthy boy. Gavin is such a fighter and for all we know he could go on longer than us, his parents. For right now we are going to work on keeping him happy and giving him the wonderful life he deserves. We will still give him his TPN, give him transfusions as needed and treat each infection as they make themselves known. All this news is nothing Adam and I didn't already know, and in some odd way Adam and I both feel comfort in just hearing is said from the main doc himself. It's hard to understand but we are actually feeling somewhat better about things.
With all this said -- We still have firm faith in a loving God who has Gavin's life already planned out. We believe that when it's time for Gavin to be with Jesus he will go. He will be made whole one way or another.
Adam and I continue to thank everyone for your prayers and support. We are always in amazement at the outpouring of love we are shown.
Thank you for taking our little boy in as your own -- in spirit and in prayer.