We’ll some days just start out way better then they end. Yesterday was that day for us.
Ryman has battled high ammonia levels all day long. One of our geneticist in DC thinks that we have been treating that whole thing backwards. The rest of them think that she isn’t getting enough protein so adjustments to the formula have added protein. This isn’t working and in a last ditch effort they are gonna flip everything upside down and take protein away in hopes of getting control of this ammonia.
We sat with Dr Morgan tonight and decided that DC is where we need to be. Not so much that they can do anything he can’t but that we need to transport her before she gets any worse. She is on pace to get on dialysis and stay on it till transplant or live with the fact that her ammonia will be 200-300. This is very short notice and caught us both offsides so we are trying to pack and plan for what this will look like.
I will be calling the living donor transplant coordinator first thing in the morning. Looks like I will aim to get the full work up on Monday. Really hoping for a match so that if it comes down to her needing it we have the option and already run the test.
It’s hard not to try and take control right now. Or at least that false sense that we think control is. I’m realizing daily how little I have to do with how this whole thing has played out yet I still keep reaching for the reigns.
Our frustration levels have been pretty high all week. I’ve almost written a few blogs and then find myself being so angry and dark that nothing but complaining comes out. If you’re one of the people I texted instead I’m sorry but thanks for all the great advice.
Please understand that we are not ungrateful for all the blessings Ryman has already had. We’ve had an amazing 45 days home and try to focus on the fact that we didn’t expect to be here right now. Ryman is a tough cookie.