Weekend Updates
This weekend ended up being very eventful! We did manage to keep Dad on the second floor, much to everyone's relief. There was some disagreement as to whether this would be possible or not, because he needs to be on the 6th floor in order to be weaned off the trache tube, but I guess either Mom or Dad put their foot down about it, because he has been there ever since. Oh, and amazingly enough it turns out that he DOESN'T need to be on the 6th floor to have the trache tube removed. Friday night they put a stopper on the trache tube, essentially a permanent, tight-fitting block, which is the first step down from the trache tube. They said they were going to try him out with that (because it doesn't allow any air in through the trache--making him have to breathe entirely on his own--he only had the small oxygen tube in his nose, like you see all the time) and if he was successful with that after 24 hours, they would take the tube out entirely. Sure enough, after 24 hours (this was Saturday afternoon) I went in to see him, and he had no trache tube any more!! This is VERY exciting. At the time, he didn't even need the oxygen tube, although they have since given him an oxygen mask to use if he feels like he needs it. So much for the sixth, floor, huh? They were supposed to have done this weeks ago, but fouled things up so many times that they never did! His hole seems to be healing really quickly, too. The nurse said it takes 2 to 7 days for the hole to close up, and when she checked it last night, she said there was only a little bit of air coming out of it when he coughed. He noticed the difference, too, in that it was getting easier and easier to speak. I'm going to have him start dictating blog entries to me, so you can have it straight from the horse's mouth, so to speak. I got the idea for this last night after he was saying that it didn't feel all that strange when they removed the tube. What felt weird, apparently, was when he was having trouble coughing, and so they came in and suctioned him--straight through the hole!!! No tube!!! eeewwwww
They did manage to also get him in on Friday to have his stomach tube replaced. They're hoping that with a smaller tube, there will be less leakage, so he will get more of the nutrients. He now has a double-valve tube, one for input and one for outtake. This will have greater control, so he doesn't get over-full. While I was in on Saturday night, they started him on a nutrient feed again, at a very low level--only 25 (mg? mL? mL/hr? no idea). When I went back on Sunday, I was told that they had increased it on Sunday morning, but apparently had done this too quickly, because he ended up vomiting again. So they dropped him down to 20. They're wanting to take it v-e-r-y slowly, so that he keeps all the nutrition in. The PCA (patient care associate) said that sometimes after an extended time without food, the nutrition they give is just too rich, and that might have caused the vomiting as well. His stomach has been empty for so long that to suddenly take in a high amount of calories and a decent amount of fiber and fat and vitamins and so forth, it just can't handle it. He seemed to be doing just fine with the lower amount, and also seems to be processing a good deal of it. This could all be a moot point, however, because they were expecting the speech therapist to come in today and start him on the swallowing test again. With any luck, he will be back on real food very shortly here, and won't need the tube any more at all!! He asked Mom to bring in a clementine for him today, just in case. Poor man--she has been tormenting him with clementines. Dad loves clementines--even under normal circumstances! Mom has been eating clementines in his room, so his whole room smells of them (and they smell SO good) and he is just yearning for food of any type--this must be so difficult for him. So keep your fingers crossed that he does well on this swallowing test. I'm actually feeling fairly confident, because he has been eating ice (and sneaking sips of water when the ice melts--sshhhh, don't tell on him!) for weeks now, and hasn't had any problems. Well, OK, last night he got an ice chip down the wrong tube (which we ALL do from time to time) but it was because he was lying practically flat on his back, and it was a really small piece. So I don't think that counts. And he managed to recover from it himself--no nurse assistance!
We just love the staff on the second floor. They have been so nice and helpful. I'm really glad we've gotten to stay there. It's been good for Dad, and for our own peace of mind! The only difficulty we're having at this point (knock on wood) is getting him up and moving. They've gotten him to sit on the edge of the bed a few times, but he won't try to make it to the chair. He's been feeling too light-headed. Makes sense to me--you would too, if you hadn't eaten in a week and a half!! I hope he'll start making more progress with this now that he's getting some nutrition. His legs are so thin, it's going to take some doing to build up the strenghth again. But they're strong, and he's always been so strong, I'm not worried.
I think that's all there is to say from this weekend. I'm sure someone will fill in anything I might have missed.
They did manage to also get him in on Friday to have his stomach tube replaced. They're hoping that with a smaller tube, there will be less leakage, so he will get more of the nutrients. He now has a double-valve tube, one for input and one for outtake. This will have greater control, so he doesn't get over-full. While I was in on Saturday night, they started him on a nutrient feed again, at a very low level--only 25 (mg? mL? mL/hr? no idea). When I went back on Sunday, I was told that they had increased it on Sunday morning, but apparently had done this too quickly, because he ended up vomiting again. So they dropped him down to 20. They're wanting to take it v-e-r-y slowly, so that he keeps all the nutrition in. The PCA (patient care associate) said that sometimes after an extended time without food, the nutrition they give is just too rich, and that might have caused the vomiting as well. His stomach has been empty for so long that to suddenly take in a high amount of calories and a decent amount of fiber and fat and vitamins and so forth, it just can't handle it. He seemed to be doing just fine with the lower amount, and also seems to be processing a good deal of it. This could all be a moot point, however, because they were expecting the speech therapist to come in today and start him on the swallowing test again. With any luck, he will be back on real food very shortly here, and won't need the tube any more at all!! He asked Mom to bring in a clementine for him today, just in case. Poor man--she has been tormenting him with clementines. Dad loves clementines--even under normal circumstances! Mom has been eating clementines in his room, so his whole room smells of them (and they smell SO good) and he is just yearning for food of any type--this must be so difficult for him. So keep your fingers crossed that he does well on this swallowing test. I'm actually feeling fairly confident, because he has been eating ice (and sneaking sips of water when the ice melts--sshhhh, don't tell on him!) for weeks now, and hasn't had any problems. Well, OK, last night he got an ice chip down the wrong tube (which we ALL do from time to time) but it was because he was lying practically flat on his back, and it was a really small piece. So I don't think that counts. And he managed to recover from it himself--no nurse assistance!
We just love the staff on the second floor. They have been so nice and helpful. I'm really glad we've gotten to stay there. It's been good for Dad, and for our own peace of mind! The only difficulty we're having at this point (knock on wood) is getting him up and moving. They've gotten him to sit on the edge of the bed a few times, but he won't try to make it to the chair. He's been feeling too light-headed. Makes sense to me--you would too, if you hadn't eaten in a week and a half!! I hope he'll start making more progress with this now that he's getting some nutrition. His legs are so thin, it's going to take some doing to build up the strenghth again. But they're strong, and he's always been so strong, I'm not worried.
I think that's all there is to say from this weekend. I'm sure someone will fill in anything I might have missed.
posted by Katie @ 3:30 PM
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