Keep catching myself stressing out over what the next few months look like. This morning I was reminded that there isn’t a need to worry. Got into the hospital right as rounds started and got to hear all the behind the scene stuff. After that the medabolic team popped in. They can’t believe how amazing Ryman is doing. Levels have stayed under 50 all week and she is taking bottles like a champ. Because she ate through a feeding tube for the first 16 days they worried that she might have to get a G tube due to oral stimulation issues. Both of those are HUGE wins. Rumors that we might move to the 7th floor before then end of the week. These rooms aren’t in the NICU and will be safer for her to not catch any other bug. Plus they have couches!!
Middle of last week they talked about us transferring to out patient. This is really scary to use and brings a whole set of problems along with it. All we could do was pray that when we got to that point that God would have continued to have doors open and needs met. This morning during rounds our metabolic doctor brought up the option of taking her home till she’s big enough for the transplant. LIKE HOME HOME for the next 2 months. We could do all the test at Vandy in Nashville until she’s 6 kilos (12-18 pounds). That’s how good she’s doing. Yes this will bring other challenges and we will have to come back up to DC for a few months around transplant time but it shows how comfortable the doctors are with her progress.
Still have at least a week worth of testing up here for liver transplant stuff. As long as she stays on this pace we should see the Tennessee state line soon.