It was super hard to leave on Saturday night, but the idea of sleeping in my own bed was so tempting. So when things had quieted down for the night, I quietly slipped out. I wasn't home very long when I got a text from Fred that he wouldn't wake up to take his medications. Fred thought that we were pulling a trick on him, not quite the simple night I had hoped for. They took him down for another CT which was unchanged. Things calmed down and they put his CPAP on and he slept. Sleeping in my bed was wonderful, even if I now have a habit of waking up every couple of hours thanks to the way things are at the hospital.
It made my heart so happy when in the morning Fred told me that he was very talkative and alert. Chris had been singing to Chris in his sleep, so I don't think Fred got much sleep. I headed back up to the hospital and he was having a much better day. He was still tired and would nap, but was fairly conversive. He was determined to stand up during PT. Fred returned home and Tammy and Mark stopped by for another visit. They had planned to place a dialysis line today and he wasn't supposed to have anything to eat or drink after midnight. He hasn't wanted to each much (a protein shake and a banana now and then) and they have limited his fluids to 2 liters.
This morning was a simple morning. OT came to work with him so I worked for a little bit waiting for him to wake up. However at about 10:00 he wouldn't wake up for his nurse to take his meds. She gave him a bit more time, but then things progress quickly. Before I knew it, the rapid response team was here from the ICU and they were moving him back up to the ICU. He wouldn't respond to sternal rubs, pain or yelling. They ran more labs and decided to try Narcan again. He didn't respond to the first dose, but then about 5 minutes later he opened his eyes and started talking to his nurse. But then was back asleep. They tried a second dose with no change and decided to also try a slow drip of Narcan. They stopped most of his medications earlier this week and the doctor said he thinks it was just a coincidence. About 1:30 he woke up.
He's been mostly awake for most of the afternoon, sometimes able to answer questions, sometimes not. They wired him up again for a STAT EEG, this time one that will monitor the electrical activity in his brain for the next 24-72 hours to watch for seizures. We have noticed him twitching more the past few days. Sometimes his right leg, sometimes his left hand like it's asleep and he's trying to wake it up.
While one of the providers was here, he was talking and said he had a strange request. He wanted a soda. They did a couple test swallows with some water and he did OK, so they said his nurse could give him a few sips. He told her she was his best friend and then told me after that he hoped she didn't get in trouble. I assured him the doctor had said it was OK.
He had the unpleasant experience of having a feeding tube placed while he was awake. He told the techs that he wasn't a fan and didn't want to do that again. He hasn't been eating much for the past while, especially the past week so even though it sucked I think it will be an important part of healing.
Among all of visits from the ICU team and his amazing nurse today, I had a visit from Dr Sborov. He's still sitting on the sidelines because as far as we can tell the kidney failure issues are related to the infection. He's waiting on myeloma numbers to come back to see how much of a part it is playing. Aside from steroids he had last week, Chemo is on hold to avoid making things even more confusing adding more symptoms or complications. I also had a visit from my parents.
Last I heard, dialysis might be happening tomorrow. There were signs today that he might be turning a corner but labs still show danger. I feel like we are close and they are just waiting for him to turn the corner.
It's been a busy and long day. Hopefully tonight is a simple night with good rest and healing.
Michelle, sorry you are on such a roller coaster. You’re such a good wife and do all you can for him. We pray for you both every day. Love you.
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