Little By Little

I woke early, precisely at 3 am. My air mattress topper, which I’d snuck out from St. Luke’s, was flat. It bit the dust and had a hole in it. I tried pumping it up to no avail. I spent nearly the next hour wide awake. I used the time to find a thin camping air mattress, similar to what I had. I finally went back to sleep, but my back felt the lack of the topper. Amanda seemed to sleep well, but I don’t think she’s sleeping through the nights still. They never did have to burrito her up under a lamp, as I expected.

I was hoping during rounds we’d have a solid plan for the sub-q air, but the news is still the same. We are waiting for surgery to come up with a plan. I think there has been some disagreement amongst the surgery team. I saw a surgeon who’d talked to us yesterday arguing with another doctor outside our room. I got up and closer to the door to eavesdrop, but couldn’t ascertain anything; that’s what I get for snooping. The morning X-rays included Amanda’s belly today, and the blockages were much better. She is still having issues with nausea and feeling full. I think the excess fluid and the NG tube have a lot to do with that.

They never started the citrate anticoagulant, so this morning the CRRT filter clotted off. Everything had to be stopped, with all new lines strung. This was our time; if Amanda was going to walk, it was then. I mentioned to the nurse that I thought this was our window. She got hold of PT, and they barely made it by with enough time to get her up for a walk; the clock was ticking on an hour after the nurse had the dialysis machine primed. Amanda stood alright, but her blood pressure dropped, and she needed to sit back down. She rested, they increased an IV med to maintain BP, and she gave it another shot. She almost reached the spot she had made it to the last time she walked, nearly 10 days ago. I had to look it up, it seems like forever ago, I just didn’t realize it had been that long. It’s been such a crazy ride!

After that, she wanted a peach green tea lemonade, which was going to be from the real deal. I took off on the trek, made it out the front door, then realized it was pouring outside. So, I abandoned that idea and went to the pseudo StarBs in the cafeteria to get a refresher instead. I grabbed some breakfast. I don’t know why I did it, it’s never good from there! Nutrition came by later on. It was the lady who would come and take Amanda’s order before in the other unit. She said she had been looking for Amanda. She took her lunch order, helping her pick things that would work for her. She was genuinely glad to see Amanda.

Amanda ate a little off the lunch tray, but she has a problem with texture and anything dry right now. She even has issues with the water; she thinks it tastes thick. She didn’t eat a lot, so I ordered some ramen from Uber Eats. I didn’t realize it was from a nearby place. I’ve walked by it a ton and just forgot about it. The driver sat there forever. I could have walked there and back a few times before our lunch showed up.

Amanda just isn’t right; she’s a little off, her coordination is off, and it’s tough for her to talk, too. She is feeling better. It’s just a slow progression. Much slower than either of us had anticipated. First transplant, she was only in the hospital for 10 days after the surgery. Today is 17 or 18 days, and at my best guess, at least that many more before we’re out of here. It’s just one day at a time, right now.

Dr. McChicken stopped by to see us. He’s checked on us more than any other doctor we’ve had. He commented, “Oh, you have the trach out”, as he walked in. He’d obviously been following the case because that was the plan up until they didn’t do it. So, he assumed they had put it in since it was part of the plan. In his typical fashion, he made a sly comment about this room not being decorated. Then he said you didn’t plan on staying here in the CVICU that long, Amanda chimed in and said Nope! You could see in his face and tone that he knew we’d had a rough go of it.

They ended up putting Amanda NPO, no food, around 5:30 pm. This was the surgeon’s orders for a chest tube placement. Of course, it was about 15 minutes after I arrived with a peach green tea lemonade. She did get to have a little tof it. As early as the NPO was, we thought they were coming that evening, but they never showed. I was a little perturbed about it after they didn’t come. Amanda wanted something to drink. It was a little excessive, I thought.

Amanda didn’t want to eat, just drink, but we were waiting for the nurse to get clearance. I stepped out to grab my new air mattress topper from the Amazon locker. Across the street from the locker, there was a pizza place that we’d gotten some desserts from before. So I grabbed a couple veggie deluxe slices and a Peroni and ate there. I grabbed my mattress and headed back. It’s nice to have a decent selection of stuff close by and an Amazon locker. I’m about to go into Hopdoddy withdrawals, though – that’s my place!

Amanda has just been feeling funky. Who knows what it is? The med to raise her BP, the sub-q air, the fluid, or the fact that she just had a new heart put in! The bowel regimen has her pretty frustrated as well. Hoping she can get a bit more sleep tonight. I think the delirium is improving as well. I got my new mattress all pumped up and ready. It’s a cot size, so it fits perfectly on my pull-out chair. I’m about to try it out; hopefully, it’s comfortable.