Let me start out by saying I have the most amazing friends. Had a bunch of dudes come hang with me last night to get me out of the funk I was in. I really needed it. Also had friends take cars to emissions, oil change, fix laptop, make copies of house keys, and start spreadsheets to mow my grass and check on my house. Love these guys so much!!!
Today has been more of the same. Ammonia level has stayed around 50. They removed the ventilator a few hours ago and she’s back to breathing on her own. We started the carbaglu at 10am this morning. This is the miracle drug if she happens to have a very rare problem in the beginning of the urea cycle called NAGS. We are hopeful for this medicine but understand how much of a long shot it is. We will not know if its working until Monday.
Monday they will transport her via flying machine to DC. Looks like we will possibly leave Sunday night and drive through the night. Until then we are trying to figure out what we need to pack to start our living abroad in DC. I know it’s not abroad but kinda feels like an adventure.
Tons of details to still figure out but we know that we aren’t alone. Brandy, Ryman, and I feel truly blessed to have all of you walk along side of us.
I’m gonna be in and out of Nashville during this time. Sky miles and southwest rapid rewards points would be appreciated.
Several babies in NICU had heart surgery today. We have gotten to know the families well and pray for healing for their little nuggets as well.