I feel delightfully evil in the weirdest way possible. Much happened that John hates, but I'm happy just because I understand what this means more than he does.
-- John's hips are killing him. (On the pain scale, he maxed out when he said "ten.") What he wanted the most was to lie down flat. I'm guessing that's the only way they aren't hurting terribly. But, he can't lie flat while he's being fed through the tube, because the food (STILL baby formula) could aspirate in his lungs. (I can now use the word "aspirate" correctly in a sentence. I'm learning medical stuff I always worked at NOT knowing.) So his nurse tells him he can lie down after that bag empties. I watch him twitch make faces, clench fist, twitch toes, (and think, "Hey! Look at that. He's moving his feet finally"), mouth the word "Owww," and even hear him say "Ow!" (The only noise that comes out is the mucus in his lungs, but it's kind of like belching the alphabet. It's not his voice doing it, but it is real words and coming out of his throat, disgusting, but real words from John. Mark that down as another reason I'm feeling delightfully evil. I was glad to hear him for the first time in a couple of weeks, and unlike that horrible day when they took out the vent and he was gasping for breath for eight hours, this time I could understand the few words he did say.) But he writhed in pain and I waited for the bag of "food" to lower. And then I noticed, after half an hour and then an hour, it wasn't lowering to any degree I could tell and he was in horrible pain. The nurse wanted to know if he wanted pain meds. (Oxycodone. The one pain med he hates, and I don't know the one HUP gave him that worked, and he would have preferred.) He didn't. But after an hour of that pain, and the food wasn't lowering in the bag, I asked him if he wanted me to get the nurse. He did. She comes in and asks him if he wants pain meds. He took it, but out of resignation and I could tell he didn't really want it, but couldn't get what he did want. He didn't want to sleep. Oxycodone was guaranteed to make him sleep. (Then I figured out why the bag wasn't emptying. She inserts the oxycodone into that feeding tube, except it's clogged, so spills a little. She got rid of the clog by pushing liquid through the tube, and then the meds got through easily. Half an hour later the bag was empty, he could lie down, but by then he was also sleeping.)
-- He wanted water. Specifically, he wanted me to give him a little sip of water. I finally have an answer to when he can drink. (A real one. Not the 20 different excuses nurses and doctors gave me at HUP.) So I told him, even I won't give him any until that trach is out. There's a balloon cushioning that trach on the inside, which guarantees, if he drank water, it would go in his lungs, which means he could get pneumonia again, which means it would be 20 steps back. So I wouldn't.
-- Next lunch was making the rounds in his wing. He told me, "Feed me!" Same problem as drinking, if any food goes down, it would end up in his lungs, not his stomach, so, NO. I couldn't do that for him either.
So, after telling him no so often, why am I feeling delightfully evil? They're going to leave him on the trach collar overnight! He's oxygenating in the 90% range. (Another word I can use properly in a sentence now, but that's become a good word, so I don't mind learning that one.) He was wheezing, his oxygen wandered down to 93, (below 90 means they put him on the vent right away), and I told him to cough! He did. His oxygen wandered back up to 97-99 right afterward, so all he needs to do is cough, when that machine beeps. If he can make it 72 hours without that vent, he gets "a swallow test."
The delightfully evil part now. "Swallow test." To make sure he can swallow, they give him the one thing he has been begging for for over two weeks now -- WATER! (Muhahahahaha! My evil laugh.) If he passes that test, they start giving him the next thing he wants -- food! Pudding and/or applesauce.
When we were first married, John and I went on a special "milkshake" diet. (I know milkshake, and that wasn't it, but it had the same consistency, and it worked. lol) We couldn't eat food for three days and drank that milkshake/diet drink four times a day. The first food we ate after that was raw mushrooms with a mustard dip. That has to be the tastiest food we've ever had. Applesauce or pudding will make that seem blah to him! This will be like surf n' turf!
So, I denied John the three things he wanted the most, but with the purpose of having him get all three soon. Soon as in possibly this weekend!
How does that help his hip? His hips hurt from lying down so long, so the very thing that stops them from hurting is the thing that causes them to hurt. He had PT today. They had him try to sit at the side of his bed, but he got dizzy. I know he was able to (with two men holding him up) before without getting dizzy. What he doesn't know is I saw him do three things he couldn't do the beginning of this week -- raise his head off the pillow for minutes at a time, go back to talking with his hands in motion, and move his feet. He should be able to sit at the edge of his bed right about the time they don't have to spend minutes trying to figure out how to keep that vent poised for action when he sits on the side of his bed. Sit up and do stuff ought to cut down on hip pain.
I also saw someone today I haven't seen since November 21st! The doctor who saved John's life. Last time I saw him I was a jumble of crying, nonsensical syllables. He asked me if I remembered him. Ha! I told him, "You're First Doctor. The guy who saved his life." We both gave that "whew" look. Neither one of us thought John would make it through that first day. Now we're both excited at the progress.
Good thing we know it. John is angry with everyone for not getting his way. John now knows a bit about what's going on with Dad. (Dad is out of detox. Apparently, he didn't have any terrible detox to go through. Fortunately, he's quit a couple of other times, so he knows there can be life without booze. Today Dad went to his new home. Prayers for brother, because as many times as my brother has told him he's not going home, Dad is sure going through detox means he goes home today.) What John doesn't know is I've had many lessons in the last few weeks on how to say no to someone I love because what they want may seem perfectly reasonable in their minds, but it's not reasonable at all.
I'm happy because John is quickly getting off the vent and then out of ICU. John is furious he's not getting the pain relief he wants now, can't drink and can't eat. (Delightfully evil. lol)
AND! He's lost 75-80 pounds in the last two months. After all this, he only needs to lose another 10-15 pounds. (He threw out all his "skinny clothes" last summer. lol) He's going to need clothes when he gets to rehab. Fortunately, he gave me a pair of sweatpants that he'd never fit in again, and I couldn't wear them for the same reason I can't wear clothes that bind at the waist, but I kept them to take out the trash. If they're not too big, maybe I can judge what size he needs.
(I just hit the 40 pound mark on my weight loss. Yay! I've lost 40 pounds since May 27, 2013. Hey, slower, but much easier than his way. lol)
Oh! And getting to the VA is much easier than to HUP, it doesn't cost money to park, the vending machines are much cheaper with healthier alternatives, (I found rice Krispie treats, Joi. lol), and I already know my way around that hospital. Other than the shock of seeing the same spot I dropped John off in front of the ER before parking the car that eventful Saturday two months ago, it was great being home! Even the wrens are well fed there. That's how nice people are. lol