Well, my bed setup didn’t turn out that bad. I took three blankets and stacked them on the crappy chair, laid my recliner back, locked the wheels, and put my foam on top of everything. I was worried about getting out and my weight shifting to the footrest and tumping over, but it didn’t happen. When I slid in it, at first, I thought it wasn’t that bad. After I woke, at least my back didn’t hurt, but I was up way before I wanted to be.
Our room is small, really small, compared to the corner room we just had on the floor. I’m hoping we get moved, but who knows? I unpacked and put my perfectly folded undies in drawers, thanks to the cleaners. Surprisingly, everything fits except the snacks on the windowsill.
Amanda’s seemed extra tired this morning. Last night, as she fell asleep, she was shaking incessantly. She was rolled over and curled up in the fetal position. I thought she was cold and shaking because of that. When I asked her, she said she wasn’t. I was cold right under the air vent, though. I also wondered if it was because of her rate like it sometimes does. She said it wasn’t in sync with her rhythm, though. The only thing I thought was that it was from the Solaris. Siri must have been worried I’d miss my usual time to get coffee because I had a notification to order Starbucks!
It was my buddy’s birthday; every time he opened the door for someone and they asked how he was, he said, “It’s my birthday.” When I got back, I was a little hot sitting next to the window, which is usually cold; Amanda got a little sun on her, too. I complained as I tried to get the window pillar to block the sun from my eyes. The blinds didn’t open or close well, I couldn’t get comfortable, the sun was still on my face, and so on. When I popped the recliner back and got comfortable, the recliner rolled into and hit Amanda’s bed with the sun right in my eyes. I just gave up, put my foot up on her bed, and didn’t even move!
Amanda initially didn’t want lunch, and I was snacking pretty hard early on. Then, in the early afternoon, Amanda wanted something, so I got us veggie burgers from the cafeteria; they aren’t that bad. Something different from our regular lunch fare. My foot had been bothering me a little; it wasn’t hurting but just a numb feeling. I got a few blankets again to prop it up for a while.
I saw the rounding cardiologist, not the professor, at our door, so I cleared my blankets so he could sit down. You can tell I like him, but I barely even woke up for the hospitalist! He checked Amanda out and then sat down with us. We didn’t have much to go over with him except for the Solaris side effects. Amanda was holding on to fluid, but he still wanted to hold the diuretics with her nausea. We were a little worried because she hadn’t gotten rid of much yesterday or today. I can tell she is retaining today, too.
Amanda spoke with the hospitalist about a different pain medication this morning. She didn’t seem on board, saying she would refer to Dr Nair. He’ll do what we need, but I don’t think she even asked him. This will be the battle to get home. Amanda has needed morphine every day since we’ve been here. She will need something oral if we are going to make it home, or we’ll end up in the ER for pain management. I just hate this conversation with doctors. It always seems they act like we are drug-seeking, but that’s a conversion for another post.
It was time for Amanda to shower, so she had the nurse get her the setup. This nurse actually stayed and made the bed. Thank the Lord because he knows I didn’t need another fitted sheet tantrum! Surprisingly, Amanda didn’t wear herself out as badly as I thought she would. Afterward, it was refresher time, so I ran to get that and a bag of crafting supplies. Brittany was coming up, and I figured they’d want those since I’m not much of a sidekick in that arena.
I booked our hotel stays since we knew the dates for the following Solaris treatments. Coming back so often is about to get expensive, especially with me taking off work. Since the transplant, we have a travel account that money goes straight to from my paycheck. With weekly treatments for a month and monthly treatments for six months, I know where that’s all going for the foreseeable future!
I may be ok with letting someone else bring Amanda sooner or later, but she felt pretty rough yesterday, so I’d like to be around for the next one. It’s still hard to let go of being her advocate. We’ve been through so much; I know her idiosyncrasies. I can tell what she needs before she sometimes does. It’s hard to entrust someone else to advocate and care for her in times like this.
Speaking of ones I’d trust to advocate for Amanda, Brittany has taken over for the night. I have the night off; I had planned to go home and take care of things if she came up. Since she’s only staying one night, and we may go home on Monday, I just got a hotel room for a break. I’m in the hotel restaurant/bar right now, just decompressing. This may not be Amanda’s most prolonged hospital stay yet, but it is mine. I’m glad she came up, I needed a minute, it’s been a long haul. I also needed something besides a chair to sleep in for at least one night!
That’s where I’m headed now, to a real bed! After I wade through all the Texans fans, that is. This place is full of nothing but Texans fans. My security guard buddy said there was a game. I don’t follow any sports, but I did think about looking up who they were playing so I could yell the opposite team’s name and then run out! I am not large enough to pull that off anymore, though!
One last laugh: this is a picture I just took in the bathroom at the restaurant from my view, a frequent at my height. At least I can see my face in the hotel room mirror!
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