I don’t have a lot of new news yet today, but one bit is interesting enough to go ahead and share. Nolan isn’t going home today either. He ended up spitting up most of his late feeds yesterday, and has already been sluggish with his early feeds today, spitting up a lot of mucus with one of them. I’m not too alarmed by that. We’ve seen that with pretty much any illness that causes a lot of mucus. He needs a little more time, but he’ll get there. He also pulled/sneezed out his NG tube – so he is choosing to fly without a net!
Landon is off of oxygen AGAIN, and has been increasingly alert. He is still only taking his meds by mouth, and is otherwise staying hydrated via IV. He managed to keep his meds down last night and this morning. So we are going to try a small amount of pedialyte by mouth within the next couple of hours. Hopefully he can keep a few ounces down today, and increase how much he is taking by mouth tomorrow.
I am running home later this afternoon. I want to visit the rest of the family. I also need to grab more Sabril, since I had packed for one boy for a few nights, and now have two boys for several more nights. We use the hospital medicine for everything else, but Sabril is a hassle to order and keep on hand, so they always use our home med for that one.
In terms of how things are looking overall, the boys are making progress, it is just very slow. But that is very normal. They have their own pace and we’ve grown used to that.