Not a lot of changes to note for the boys. As I predicted earlier, feeding is going to be their ticket home. Nolan is now back on NG (a tube through their nose for feeds) and getting most of his feeds that way until he can more consistently keep them down. Landon has an NG now as well, and we are trying to work our way back up to where his stomach can handle ANYTHING and stop relying on IV for hydration. We finally got his meds to stay down fairly consistently. We’re working on small amounts of pedialyte. So far today he’s kept down…2 ounces. So needless to say we have a long way to go. Just in case we go home with NG tubes, J received his training today, and got to practice on each boy. I will get my training another time. But we can’t even go home on an NG until Landon keeps more down.
Depending on how I word things, it could sound like they are still just fighting a virus, and we’ll be out of here any day as soon as they eat well. OR…it could sound like we aren’t leaving here soon, and without G-tube surgery scheduled. We’re just all that unsure about where things are headed. I’ve been worried about loss of function in Landon since before we even made it in to the ER. But loss of function doesn’t necessarily explain his intolerance of even an NG tube feed. So there’s still a chance this virus is wreaking havoc and his system just needs more time. Only time will tell.
We like the medical team. They are working hard, are thoughtful, and they value and include me. In fact, I am going to start splitting my time between here and work for now, trusting they understand our goals and concerns. That will allow me to be more free later on if we need some time to reacclimate at home, or if we end up with a G-tube surgery.
We’ve enjoyed some family time the last two days. I was able to run home, visit with J, K, and J’s grandparents, and sleep in my own bed. Today K enjoyed being mistaken for a doctor, delivering balloons, and visiting the local children’s museum. All things considered, it was a good day for all.