Well today DIDN’T go the way we planned it. Woke up with a high ammonia level with 97. This is due to the fact that they started bolus feeds. Basically they are giving her all her food at once instead of a drip. This is to see how the meds react. They have not reacted well. We now have an ammonia level of 360 + and are in surgery to have the cannula replaced and dialysis started. Its very hard to not be crippled with fear right now.
We did decided this morning that Children’s national hospital (Washington DC) and Georgetown Hospital are our next stop. We will be moved there no later then monday morning. This is where we will do treatments for the next few months until the liver transplant. Dr. Summers is at Children’s National and is the number 1 guy in the country on medabolic disorders. Georgetown has an amazing transplant team. It’s very hard to imagine uprooting our lives here in Nashville to travel and live 650 miles away. We know that we will have the same support system no matter where we are but it’s going to add a ton of stress to this already crappy situation.
I did have an amazing friend Cory Snider reach out to me 3 days ago before DC was even on the table. He offered us a place to stay if we ended up in that neck of the woods. Bet he didn’t thing that 3 days later I’d be talking about coming to stay for the next 6 months possibly.
I try to remind myself that God keeps opening up doors before we even need them.
We still don’t even know which exact part of the Urea cycle is messed up. It’s most likely CPS1 but there is a tiny 1 in 100 million chance its in the nagg cycle. There is a treatment if it’s in the nagg cycle that doctors can’t even explain. They described it to us as winning the lottery, or a hail marry pass. They are going to try this carbon glue treatment when they start the dialysis. I truly am sitting here praying that God turns this 1 in a million to a 1 in a 100 million. I can’t even explain how much Ryman has inspired me already and know that this story has a miraculous ending. It has to.