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Parenting
Back with my brother... another update.
{I'm too lazy to go back and find my original posts, but my 18yo bro has been hospitalized with a rare autoimmune disease}
I came back hom today to be with my mother and brother. A week ago, they had to intubate and put my 18yo brother on a ventilator. (He was diagnosed with Wegener's Granulomatosis almost a month ago, has declined rapidly and has some pretty severe lung damage). He was supposed to be on the ventilator for only a week, but now a week and a half has passed and they're expecting for him to stay on it for at least another couple of weeks. Right now, for every 2 steps he takes forward he makes 3 steps back. Its so frustrating. And right now its not the Wegener's that is putting him in the most danger, its the complications from treatment.
I hadn't been home for two weeks and made my mom send me a picture of him so I could see what he was going through. I'm so glad I did that now. If I had walked into that room and been unprepared to see him completely sedated and unresponsive with more IVs than I could count in him and all sorts of tubes coming out of him, I'd have been a wreck. Still, I was a wreck. Its a a sight I'm not going to get used to.
Mostly, hanging out in the ICU sucks. It especially sucks because my brother is BY FAR the youngest patient there. The next youngest is a pg lady who was having breathing and heart problems and had to have an emergency c-section a couple of days ago at about 30-32wks. They're still not sure whats wrong with her. Thats another heartbreaking story. But everyone else is elderly and frail and they type of person you'd expect to see in an ICU.
Anyhow, he's supposed to graduate from HS on Saturday. Its a small all boys Catholic school that my middle brother also attended. We're going to go because they will be talking about him and it just doesn't feel right to not have any family representation there.
Anyhow... today has been a surreal experience. But he was good today, very stable. Hopefully we can have 2 good days in a row, so far that hasn't happened yet.
And thanks everyone for your continued prayers/thoughts... Every little bit counts.
This discussion has been closed.
Re: Back with my brother... another update.
DD #2 - 03.13
"
Ethan {1.11.10} & Malia {12.28.06}
Oh wow, I didn't see the post where you said he'd been put on a ventilator. How scary. Is he aware of everything or do they keep him sedated all the time? Do they think he's healing or are the treatments going to continue to cause problems? I hope he's feeling better soon. This must be so stressful for you, but I'm glad you're there with him. My brother was in the ICU at 16, and I know how heartbreaking it is to see someone so young in there amongst all the (mostly) elderly heart patients.
Thanks... they were keeping him lightly sedated, but he could hear everything that was going on in the room and if any alarm went off or if he could hear our mom upsent, it'd send his heartrate, blood pressure and respitory rate through the roof. It wasn't helping him any, so they've started sedating him a much more heavily. Its hard because he's so young and his liver is metabolizing the drugs so fast, so he's getting lots and lots. He's pretty unresposive now, but more stable.
Things are looking better. This disease is just so rare, especially for someone his age. But my parents (who are doctors) have been in constant contact with a specialist at the Cleveland Clinic and right now they're confident that he's got the right team of docs around him and he's getting the right treatment.