Larry came home from the ICU. It wasn’t until early afternoon, so we were able to spend the morning in the room with him (Alyssa, me, Fran). Michancy left today, but she didn’t come in with us as her flight was in the morning. She had had a chance to say goodbye to Larry the previous day, which of course is not something you ever want to have to consider.
Today, Larry was pretty with it and able to eat, which was good. After lunch, we then got the process started and he was transported via ambulance back home, while Fran and I drove back and Alyssa was with Larry. True Care hospice is who we’re using and they’ve been pretty amazing. They provide absolutely everything you need and they delivered it. An intake LVN helped get us situated at the beginning on site at home, and she got all the initial requests started. Larry spent that first night back in our bed as that was what he had requested. It was a hard night for me as I couldn’t sleep not knowing what he might need.
An RN came that evening before bed (very hot, btw) and he evaluated Larry more thoroughly. Unfortunately, while Larry was okay (relatively), Paul mentioned that there were concerning things. I think that was his way of saying Larry doesn’t have a lot of time left, which I understand and can’t deny.
Larry was still in the ICU today. We also learned he’d stay in it another night, with the plan to get him discharged from the hospital on Thursday around 1pm. Larry continued to improve and today, on Christmas (Merry Fucking Christmas), he was very aware and with it. Obviously still tired as hell but much more our boy. We spent all day with him. Alyssa flew in in the afternoon and made it out here at the hospital to see him. Still coordinating with the hospice to get details finalized – we are looking at a 1pm discharge time. The staff was nice to us that day as it was a skeleton crew and they were very lenient about letting us all sit in the room with him without a 2 person limit. It was nice. One time while we were out in the main hallway, we were surprised to hear Larry’s voice as he was out for a guided walk with the PT team, who walked him to the window. His strength and awareness was just so much better.
The ICU team looked to see if they could find any pockets of liquid that could be drained to help provide relief. They weren’t able to via ultrasound. His discomfort is being managed though, so we should be okay going forward.
His father is setting up time to come and visit on Friday – so that’ll be interesting. Alyssa is here so she can be the intermediary, which is appreciated.
That night, we went back to where Alyssa booked a hotel room – a Marriott right by Burbank Airport. The hotel has a Daily Grill restaurant which was open on Christmas, which was good. Service kind of took forever, but it was good to be able to talk. Rained like crazy when we left, and I passed the fuck out as the night before I had not slept well due to the sheer amount of wine I drank.
We came back to the hospital in the morning, bringing Michancy with us this time. She had ended up staying home on Monday (day drinking, eating, Netflix watching). When we got there, Larry’s levels were improving but it was still a struggle. He had a bit more lucidness but there was still a lot of confusion. Mila and Sveta came out for the day as well. Dr Weinberg was who was able to come and consult, and we learned what we basically knew what was coming – Larry’s not going to recover or continue his treatment. He is going to die. Within weeks. It is not a surprise to hear these words, but to say that my heart didn’t get ripped out regardless would be a lie. We spent a lot of time that day with him, rotating in the room as only 2 are allowed at a time in the ICU. Mila brought bagels and nosh, Sveta brought Xanax, and it was time for us to grieve and cry in the waiting room. I’m writing this from Thursday (the 26th), so I have a bit of a detachment from the day just because of time and the interim moments we’ve had, but it was a horrible day. Dr Weinberg sent a recommendation for hospice care, and we started that process going. It seems like that will be a wonderful comfort as they will take care of quite a lot. He will not have pain, and he will be surrounded by love. As the day progressed and his levels continued to stabilize, his awareness was better. He did ask what Fran and I talked about with Dr Weinberg, and I had to tell the love of my life that he no longer had any options and we were going to go home to live out the rest of his days. I had to tell him he was going to die.
Mila and Sveta both left after 3-4 hours, but it was wonderful they were there. Michancy remained as she’s staying with us, and she and I were able to be there for each other. We did not have anyone stay over that night as it just isn’t really a helpful thing. So we all headed back to home that night, and we ate leftovers from our dinner the previous night that we ordered from a nearby-to-the-hospital Izzy’s Deli, which was chicken soup, a French dip sandwich, and other leftover food. That night at home, the 4 of us sat at the dining table and looked through pictures and told stories, laughing and crying. Michancy and I also drank far more wine than we should have – but it was cathartic. Larry will never be forgotten and has had an impact in so many lives.
I guess no miracle is forthcoming. We had to take Larry to the ER today. this morning he was really really weak and very out of it. Fran suggested we call Brandon to see if they had any guidance and he talked with Dr Weinberg and they recommended he come to the UCLA Santa Monica medical center ER for treatment and analysis. So we got there fairly quickly and after getting processed in, it turned out that he had really high levels of potassium and very low levels of sodium. The sodium we knew, but it wasn’t obvious that it was such a critical level, as while we had been prescribed salt pills, they were not in stock at CVS so he hasn’t been taking any. They had him in a private room at the ER area, and he started a first round of treatments to help regulate these levels – but it’s a full process, and requires him to be in the ICU at least one night and probably the regular hospital a few more days for monitoring. The ICU doctor mentioned that the use of spironolocatone may also have contributed to this condition as while it helps process water out of the system, apparently it doesns’t help with getting rid of potassium. So there will be efforts to fill him up with liquid so he urinates a lot which is the natural way to pass potassium. As for the sodium levels, they are critical to brain function, and is very likely the cause of why he’s so out of it. Today was a nightmare to witness, as he just kept getting more and more confused about everything. Everything. Fran ended up staying at the ICU tonight as we just were concerned that he wouldn’t be able to communicate effectively, as he literally doesn’t know what’s going on. He’s in a giant fog. Please God, let him come back at least somewhat. I know our fight is doomed, but please don’t make him lose himself like this.