I hate hospitals. Like, viscerally hate hospitals. I hate the way they smell, I hate how you can never really sleep, I hate how someone is always coming in and disturbing you. I hate being hooked up to things and having tubes & wires tangling up. When I get to leave, it’s like being released from prison (I imagine).
As much as I hate them, I believe it’s exponentially worse for Henry. He was diagnosed with pneumonia on Sunday night and admitted with oxygen levels in the high 70s. It’s now Tuesday and he’s still here. See, for me it might be bad, but at least I understand what’s happening and why. Henry doesn’t have that. All he knows is that he doesn’t feel good and now everybody’s sticking things into him, shoving things in his face and not letting him do what he wants. They keep ccoming at him with these terrifying masks that loudly hiss and some even spew mist in his face. They want to keep these hissing monsters right in front of him constantly, no matter how loudly he protests. He continues to say that he’s “all done” and want to “go in the car” and “go home”, but no one will do what he asks. I honestly cannot even understand how difficult this must be for people like Henry. I mean, how do you explain it when nothing you say makes any sense?
When we brought him in, they talked about transferring him to a bigger hospital like Children’s Memorial in Chicago or Lutheran General in Park Ridge because those facilities are better equipped to handle the needs of a kid like Henry. They have more technology for kids who have sensory problems and the staff has more experience with this stuff. While I’m willing to do whatever needs to be done to keep him alive, I was hoping we wouldn’t have to go that far and then figure out how to handle the other 3 kids. They decided to keep him here, but I’m not sure I’d do that again. they simply don’t know what to do with someone like him here. They seem confused by his inability to tolerate the treatments. Bewildered by his eating and drinking problems. Confounded by his flexibility and ability to remove tubes and wires with his feet. So there’s this underlying current of disbelief and judgment from some of the staff that really makes me furious. Thankfully, his aide, Lisa, and his speech therapist, Allison, from school came to visit yesterday afternoon and validated that I *was* right about him and that I hadn’t just been making excuses for his lack of cooperation. It’s very frustrating. I mean, whatever happened to oxygen tents? That would totally work for him. There has to be some sort of way to get him infused with oxygen without having things attached to his face, y’know?
Now the big struggle is getting him to eat something and getting his O2 sats to stay in the 90s. Maybe by tomorrow???Tweet