She’s a 1 in a million!
Ryman was moved from Baptist hospital Thursday morning to Vandy NICU. She had an Ammonia level in her blood of 1581 (average is 40). This is due to a metabolic disorder. She started the day off with having a surgery to insert a line in so they could use an Eccmo and Dialysis machine at the same time. Basically they wanted to get this ammonia level down very very very fast so it wouldn’t effect brain functions. Within a few hours they had it under 100 which is absolutely amazing. By using the Eccmo machine they had to use blood thinners which could cause bleeds in her brain. They have her on a ventilator and sleeping and she will likely stay this way for the next few days. Today they have changed the Dialysis machine to a much slower one that should keep and help her stabalize. There are 2 nurses by her bed 24 hours a day… already an attention hog!
What we know about metabolic disorder.
It’s one of three enzymes in the early stages of UREA cycle, 1 in a million. This morning we were told that this makes this the problem worst case….. of course it does. She basically can’t break protein down. Naturally the body breaks muscle proteins down and repairs them daily for growth. You can see how this is more then a diet issue. The immediate goals are this: First, try and get her off the dialysis. Second, test out foods and meds. Then we can remove the surgical line and wake her up. If you only new how bad we wish we could hold her. It will likely be a few days to figure out which exact enzyme it is. There are only a few places in the world that do this testing and its done by hand. They already have Ryman’s blood and are hoping we hear back by Tuesday.
Long term effects and plans.
First we need the level of ammonia (1581) to have not messed with any brain function. The doctors assure me we caught this very early but we honestly will not know for weeks or months if this has slowed her down. Big one here…. If she qualifies for it which is the only way there will be any quality of life she will be put on the liver transplant list.
Through all this chaos Brandy and me are very hopeful. Every time we feel like we are about to break, God continues to show up. We continue to remind ourselves that God doesn’t make mistakes and that ANYTHING is possible. I wish I could tell you how many nurses, doctors, social workers, desk clerks, ….. have said that its a miracle that this was caught when it was. We almost took Ryman home Thursday night and if we had she wouldn’t be with us now. The Eccmo team brought a baby lamb in that is currently watching over Ryman. How fitting!. We truly appreciate all the prayers that have already been said and encourage them to continue for the doctors, nurses, staff, people in the waiting room that’s life we can impact, the transplant team that will one day help rid this disorder, (to in my option the most important) the family that will give up a baby liver for Ryman one day.