My brother was supposed to be released yesterday, and then they said today around 2 pm. I called around 1:30 to see why they hadn't called me and they said his blood pressure crashed as soon as he tried to stand up. He had this the last time he was in the hospital so I didn't freak out, at least at first. But his blood pressure has stayed around 71/55 for at least a couple of hours, so they are fussing with his meds. The medication that is used for his high heart beat lowers his blood pressure and vice versa, so they try to find a balance.
My father has something similar, but not with the sudden dropping with standing. This kind of condition takes constant supervision, which you are just not going to get without 24 hour nursing care. I asked the hospitalist what the long term prognosis is, it sounds like it's pretty unknown, perhaps not more than 2 years. She suggested seeing how he does in the next two weeks and if he doesn't improve, to consider palliative care.
There are varying degrees of palliative care so it's unclear what that means.. I am going to have to find a good palliative care doctor, assuming that he needs one.
Meanwhile, yesterday he said that he still wants to live, so I have decided to do whatever I can to make that a reality (except for paddles and a ventilator). I remember telling my father to be very careful about saying he wanted to die because in the last months of his life, people start to take that very seriously. I remember telling him that he would have to repeat it for 4-5 days before I would start taking steps. That seemed to work. I am going to take the same approach with my brother. Right now, we're not there. It's just that it's so hard to get in his head and figure out what is really going on and what he really wants, And right now, he is really pretty out of it. We were watching one of those cook off challenges on the Food Network, and I got called away by the doctor right when they were announcing the winner. When I came back in the room, I asked him who won and he had no idea.
I had no idea when I started this blog that things would get so serious. However, I think it's really helping me to write this all down, and it certainly is sparing my friends from having to hear the same old anxieties over and over like a broken record! I highly recommend doing a blog to my sibling network friends. I think you can just use it as an easy way of keeping a journal, you can set the settings so that no one sees it if you like, and you can also control who can see if if you want to. I have chosen to let anyone see and comment, but only let people who ask to write their own postings. So far, no one has chosen to do that, and that's ok with me too. Mainly this if for me.
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