Corrigan and I are camped out here at Johns Hopkins for the week. He isn’t sick, he has just had a few months of wonky lab results that lead to two hyperammonemic (end of October and mid-December) events in less than three months and the team wants to get a handle on things before he decompensates again. It was nice to be able to pack ahead of time and we snagged a room with an amazing view this time, so….score?
It is weird being here and not hovering over my really sick child for the few days. Instead he is happy, relatively healthy and doesn’t have a CLUE why he is here. It is going to be a challenge this week, but he is such a good patient, he will do fine.
He is really starting to find his voice in the hospital. A doctor that asked to listen to his chest today moved to lift up his shirt and out of the blue he looked at me and yelled, “HELP ME!” Later, when a nurse was flushing his port after drawing blood he sternly said to her, “Be careful!” and when someone walks in that he doesn’t recognize he politely, but firmly says, “No thank you!”
I love it. L-O-V-E it. This is his life, this medical mumbo jumbo stuff, but he should have a say, you know? He should be able to speak up about his body and who touches it and when. Of course there are times that there is not room for negotiation, but I so love that instead of being so passive, and almost oblivious to dozens of people touching him, he is instead speaking up and sharing his concerns. It’s just great to watch as he finds his voice.
Not really sure how long we will be here, we could be out as early as tomorrow if this morning’s labs come back perfect (They won’t) or as long as a week. We are ready though. Well, as ready as one can be to be stuck together in a box, during flu season, in the hospital. We are safer in here, than out there in playrooms and hallways, which is a bummer because it is rare he is so healthy and able to enjoy the amenities here, but his ANC and WBC came back pretty low (surprise to us and unusual) so he is safer in here for now.
Lord willing they will fix him up well and he will have no more issues as long as we can keep him healthy from the viruses that are out there in the world. It is one thing to be in the hospital because of a bug, or bacteria…it is another to be here so many times because he is metabolically unstable due to incorrect diet/meds. This needs to be figured out and I have high hopes just that will happen this week!