I have realized that Raul and I have spent more time together on the 8th floor of this hospital than we have anywhere else, even more than in Romania I am guessing. It has become our "home" for now. At this point though I think it is good we are here, because the RMH is dealing with some bugs going around, and everything is closed down other than the bedrooms!
Raul is doing better in a lot of ways. He is acting more like himself, playing, and laughing again. However, now that they stopped his scheduled tylenol he is back to having fevers. He is also still having a lot of trouble tolerating his feeds. He vomits sometimes, but mostly violently retches. It is sad when he retches because he has trouble breathing, and it really scares him, so then he cries a lot after. We are going to try switching him to another formula to see if he will tolerate it better. We have also discussed the possibility of switching his G-tube to a GJ tube if he really just isn't tolerating the formula in his stomach.
Yesterday he had x-rays of both knees and ankles. We had been discussing the possibility of a bone infection since early in his last stay, but had held off on doing imaging as he didn't seem to have lots of bone pain or other symptoms. But yesterday on his x-rays his right ankle/heel looked "suspicious", which is the area we had been concerned about since the beginning. They are discussing now what to do for it, but if they treat it as a bone infection he will likely have to take antibiotics for months. From what I've read it seems like they usually start treatment with IV antibiotics, but since they hate putting lines in him, we'll see if they just stay with oral instead.