Gene’s update: Day +12, May 6, 2010
Synopsis: Really awful. Some complications they say are reversible. Gene is very confused. His mouth and throat are horrible, he can’t really talk and not sure how much longer they’ll even let him try to eat, though he is trying. He has a morphine pump which can give him 1 mg. every six minutes if desired, a very generous prescription. It will get better and the best news, he shouldn’t remember this part. That’s the summary, read on only if you want the gory detail.
I spent my first night in the hospital last night. They couldn’t find a cot despite 5 requests, so I put three chairs together with some pillows and caught a few naps. Gene was up a lot. His weight had been going back up for the last few days (up to 65 kg after going down to 53 after being back up at 69 the week before), as had some of the blood numbers that indicate kidney function concerns. He wasn’t really getting rid of any water despite being given fairly large doses of diuretics. And he has been really confused, including hallucinations, and nodding off frequently, kind of like a junkie would do, very scary to watch. When he wakes up he continues a strand of conversation (in his barely audible, painfully sore voice), that really didn’t exist. Two days ago when I expressed concern they said it was the morphine as they’d moved him from vicodin (which was also causing a great deal of confusion and “vivid dreaming”) to morphine in his IV to yesterday the morphine pump. Even after 24 hours on the pump he has had a hard time understanding how it works, but we’ve tried to convince him to just push it when it’s green and we’ll explain the details later. But yesterday they decided it was more than the morphine, it was very low sodium levels due to the water retention. Once again, I tended to take “electrolyte balance” kind of for granted but boy is it critical.
Yesterday they called in a nephrologist (kidney specialist), did a CT Scan of his kidneys, and analyzed his urine. She said he has developed a condition called acute tubular necrosis, death of some cells in the vessels in the kidneys. The “casts” in the microscopic analysis were in a state that is better than worse case and leads them to say that it is reversible, the kidneys will recover. In the meantime, his sodium levels are very low, leading to the confusion, the nodding off and those are such a delicate balance that they must be brought up slowly….so this may take three or four more days to resolve the sodium imbalances and resulting confusion and, I honestly don’t remember how long she said for the kidneys to heal. His numbers on kidney function were not any better today, a little worse, but the sodium levels are improving and so that is the good news.
His mouth, throat look so awful. I really couldn’t look, just looking at his lips was more than I could take. But last night he was convinced that there were noodles inside the blisters from the broth with a little bit of noodles that Patty made for him. So I looked with the flashlight as he asked me to, and reassured him that was not the case, but he even asked the nurse this morning to look again. Pobrecito.
And he is itching all over, scratching, scratching, putting on lotion in the middle of the night…I’m worried that he’ll create infection from scratching his skin raw. So for the time being Jim is covering the early shift, he got there at 7 yesterday and today, Patty is doing the cooking for all of us, laundry, sewing sleeves back on pj’s and hemming, AND the midday shift and last night and tonight I have the night shift. It is amazing how unattentive they were to Gene in the night. And it was the student nurse who is finishing a 2-year degree who was doing all his vitals, blood draws, etc. She was great but still….this feels so critical to me, more critical than it has ever been, that I wanted him to get more attention. The regular nurse did do her regular assessment, but as Patty, Jim and I have discovered, his “self-reporting” is no longer accurate. So this is why the caregiver role is so very critical. And why I am so very blessed to be able to share it, I can’t imagine doing this alone. And yet even some patients, let along caregivers, are alone.
I knew this time would be rough but we kept telling ourselves better by day 14, as they’d originally told us. With day 14 only 2 days away, and the doctor now saying (once again) “or a little bit longer”, and it seeming more dangerous, more critical then ever…..I could not have truly anticipated how very, very, hard this would be. And it is compounded by the fact that this is a complication out of the norm. Apparently, as explained by the nephrologist, the kidney damage was caused by an interaction of two of the (many many) drugs he is on, the antifungal and the tacrolimus, anti-rejection. A “very rare” occurrence….but we got it. And because of his confused state and extreme challenges in communicating (we are getting some hand signals going on), its not like it is really Gene, but of course it is. It is just so hard to watch him hurting so much and being so out of it. And in all of this, he really isn’t sleeping that much. He was up every hour from midnight when we shut it down, sort of, to 4 AM when they did vitals and blood. Then he actually slept, based on his breathing, from about 4:30 to 6:30 and then he hadn’t gone back to sleep when I left around 9. And I think that is more the norm than not, but he says he slept well. Again, self-reporting not accurate. How would they (nurses and doctors) know that if someone were not there to counter his claims?
Anyway….tonight they’ve promised me an air mattress to go on the chairs, and I’ll bring my own pillow. Patty and Jim are just incredible in the level of support they are providing to both Gene and I…..I can’t imagine being able to leave him alone and I can’t imagine not being able to step away for a bit. So this part of the ride is taking a toll on them as well….but my sister Esther is on her way across country to join the team and then take over…..they’ll be ready for the break! Breezy is actually hanging out in Patty and Jim’s room with them, and making sure I sit still when I’m home. So that is more than enough detail and time for a shower. Sorry to make you worry….but I know so many of you have been wondering. I was thinking I’d save some of these details until they were more past tense, but I’ve been repeating them so thought I’d put it out there. It’s a scary, sad and tenuous time, but we will cross these badlands, el malpais, and make it to the other side.
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