John called me at 10 AM to tell me they were taking him down for a CT scan, so don't come yet. He had no idea why. I've had CT scans. They don't take too long, so I figured he'd be back in an hour and I got to his room at 11ish. Okay? So I was wrong on the timing. He was still gone. So, while I waited, I did a quick handwritten note to his doctor that told him that John was coming up to his 100th day of tasting nothing in his mouth, and I wasn't going to let that happen. I'd bring him something to eat before that. BUT, if the speech therapist gave me a very good reason why he can't eat yet, I'd listen. (They've been telling him she was coming "today" every day for over a week now. I got tired of that lie.)
When I looked up after writing it, I saw his doctor walk by, so raced out, handed him the note and went downstairs for something to eat and drink and a smoke.
When I came back, John still wasn't there, but the doctor came in to tell me he'd stop by to talk to both of us when John returned. Since he was there, I also asked what the CT scan was for. Found out, once again, there was discussion if he'd have this same CT Scan as an outpatient later on, despite the fact that it was because he had blood in his urine and because he can't urinate the old-fashioned way. His urologist wanted to check his bladder and kidneys. (Which is when I said, yet again, that he had a cancerous cyst on his kidneys two years ago, and he had a UTI that they couldn't figure out why they couldn't treat effectively for close to a year before all this happened. And that's in his records, since it's the same hospital all that happened in.)
So when John returned at noon and had his cup of ice chips (eeek! A mechanic was fixing the ice maker when I went in the first time, but he fixed it within half an hour, and there was ice available when he left -- whew!), the doctor returned. His bedsore isn't healing in a way that satisfies the bedsore doctor (insert proper name for that specialist if you know it. I simply can't remember all the itles they have), so he would go down to the operating room to get it cleaned out and fixed to heal better. (Didn't quite understand all that, but something is wrong and they were going to fix it. This evening, when I called John to see how he's doing, he said she did it in his room, and what she told him last week was drastically different than what she said this time. That coating that formed when it happened -- not skin, not a scab, but something the body creates to cover an open sore -- won't leave and should have been replaced by his own skin by now. Last week, she told him it was all gone. He was checking with me to make sure he wasn't nuts in thinking she told him that last week. She did. I remember he told me.)
And John's main doctor told us both that the speech therapist -- aka swallower tester -- would really come tomorrow afternoon. He had talked to her, and he would check a couple of times tomorrow to make sure.
(He told John that I was a great advocate for John. Not sure if that was a compliment or a "your wife is annoying," but I don't care. Someone has to. 95 days! That has hit ridiculous!)
Also found out what "sit up" means in degrees on a hospital bed. John has been told 30 degrees is optimal, but I couldn't get him to think past that. He was told 30 degrees for when he is being fed through a tube. I wanted to know how much he has to be sitting up to eat. 85-90 degrees. It's going to hurt incredibly (his hips hate 30 degrees. They despise more than that, but I have to make him understand he has to suck it up, because the only thing that will make his hips better is if he can stand up and walk. I hate telling him he has to suck up severe pain, but I hate he hasn't eaten for so long worse. And that he will never come home if he can't suck up that pain.)
So, my thinking is John hs been sucking in ice chips and drinking water successfully since January 15th. He hasn't choked once, and if he ever aspirated into his lungs, he would have ended up with pneumonia or bronchitis or something like that. He hasn't. (At least he hasn't since early December.) So, although he's not doing well with sitting and hasn't hit standing completely, he really has been exercising his swallower for over a month and as regular a base as they allow him. (Last night, his nurse told him he can't have water with his chips. One nurse actually wanted to hand feed him two small chips at a time, and she'd be back every "five minutes" -- which in nurse code means "every hour or so" -- but he chose be thirsty rather than put up with that. And other nurses play games with how much he drinks and how often. So, although the sign says he's allowed all he wants, the nurses make their own rules.) He's got swallowing down.
BUT please pray he passes that test tomorrow. And please pray I'm there when the woman shows up, because I need a reason I can buy, if she says he can't. Otherwise, I'm sneaking him something tasty to swallow.
Oh, and pray his promised custom-made wheelchair (he's big) shows up before the weekend. It was ordered three weeks ago. I got a call two weeks ago saying they were still waiting for a part. And last week, the PT said the part was in, so it should be here soon. (The place that makes it is 20 minutes from the hospital.) This weekend is supposed to be in the 50's. John can't sit on his own yet, but I'd like to get some help to get him in that chair so we can go outside and enjoy the hospital's garden. He desperately needs to do something different and enjoyable, even if not up to "thrilling."