Moving Forward, but Slowly

Friday, as I was going to leave for the football game, Amanda was having trouble breathing. She was getting a little anxious about me leaving, I think. She’s been getting anxious about odd things lately. She was worried about getting to bed early because I wasn’t going to be there to get her in bed. I lost it a little. I’m not the only one who can tuck her in and get the pillows right. She didn’t need to get into bed that early either, they want her in the chair most of the day. I had to give her the, there are multiple people here whose jobs are literally to take care of you, talk. I can see her point, as I know how she likes things. I almost watched her die twice in the ICU; missing one night of tucking in pillow placement seemed a little small to me. The extended ICU stay messed with us both, just in different ways.

It was good to have a break for a minute, though. Beverly came to hang out with Amanda while I was gone to the Titans game. I left a little early to go to Brett’s apartment since they were playing a little pool before the game. A couple of his other friends were there too. After a couple of games of pool, we all walked to the game from there, which was only a mile away. The game was fun, we had cheap nosebleed seats way up top, but Brett’s friends had some of grandpa’s lower-level season tickets. So once a seat opened up after halftime, we found our way down to the good seats to finish the game out. It was a good time, it was a nice distraction from these hospital walls.

Saturday, I left a little later than usual, since it was a weekend, and it’s a quicker drive. That didn’t matter; the team rounded up about an hour and a half early. I guess they were trying to have an early quit on the weekend. The doc said he would circle back to talk with me about my SVC syndrome question. So, Amanda didn’t want me to get breakfast since he was coming back. I waited forever before I left to get what was pretty much lunch by then. He did come back in the afternoon. He explained that the clots were likely making the symptoms seem like SVC syndrome. Once they clear, it will get better, is his thinking.

I was pushing Amanda to have a shower, but she was anxious about it. The NP had cleared it, but she acted like they were unsure on Saturday during rounds. I think she was seeing what she wanted to be, and was anxious about it. I think she just needed to get out of the hospital mentality. She is only going downhill; we need to change something if we can’t get out of these walls just yet. Amanda had been wanting a hamburger, but was apprehensive. Friday, I hadn’t eaten, so when I drove over to go to the game, I got White Castle. An NFL game wasn’t the only first for me; I’d never had White Castle before either. I figured those were mild and soft for Amanda to eat, so I picked them up for lunch. She liked the ones, but didn’t get many of the sliders down.

Amanda has been getting weaker and weaker. She is having issues getting up, even with help. I had been helping her up with the walker in front of her, leaning over just to give a slight boost, and making her do most of the work. She needed more help, eventually a full lift up to straighten her legs before she could stand. She nearly fell backward when I was getting her up from the toilet. It took a good bit to get her up from the position I was in, and it was dead weight I was lifting; she was just no help. Being bent over the walker, I could only lift with my back, and I hurt it, too. 

Finally, I told her I couldn’t do it by myself anymore, my back was killing me. I figured I wasn’t the only one who’d had this problem before as a caretaker. My father, at 80 years old, getting my mother up had really done a number on his back as her caretaker. I used my Google Fu and found a site that had some good advice. So I put it to use, bending down and having Amanda grab around my neck like we were dancing. I just stood up. She popped right up, but we had an issue; it stretched her sternum a bit too much. As with dancing, she can’t put her arms around my neck then, the nearly foot and a half height difference proved to be too much. We adjusted the next time and found a way to make it work.

Just as I was going to leave for the night, I was getting her up to go for a walk before putting her to bed, her wound vac began leaking. It wasn’t the typical slightly yellow lymphatic fluid; it was blood. It scared her, and she was really anxious about it. The nurse came in to fix it, but it wasn’t helping. We asked the team to be paged. The night NP showed up to check things out, I joked with her that I really didn’t want to keep seeing her! She called the surgery; the fellow was in surgery and said to put a pressure dressing on it. I knew the deal. It was Saturday night, and he didn’t want to deal with it after his surgery. He obviously didn’t know Amanda’s case. I told the NP, “No,” and explained how we’d been down that road, and the output was about 50% more than when they’d put it on a couple of weeks ago. 

She needed the wound vac fixed, not thrown out. The constant dampness and continued dressing changes were wreaking havoc on her skin. Everything leveled out, and once I got her in bed, the site leaking around the wound vac slowed. It seemed to have gotten irritated when the dressing was changed the night before. You could see a fold in the skin and how the bandage, which is supposed to be air-tight, was put on hastily. I wasn’t worried and figured we just needed a dressing change, which is only changed by the surgery team. Amanda was still a little anxious about it, though. I stayed for a while and was getting ready to leave late in the evening. She was ok with me leaving, but wasn’t happy that I wasn’t planning to begin around for rounds the next morning. Sundays are the best days for me not to come in early, it’s the last day the cardio is on, and I wasn’t about to be at the hospital before 7 when I was leaving so late. The wound vac was out of the team’s wheelhouse and would be the surgeon’s deal to handle, and they never come early. I need a planned day to sleep in a bit here and there. My phone has been saying the apartment is work and the hospital is home. I guess my short hours at the apartment are more like work!

When I got to the room Sunday morning, Amanda was back bleeding from the wound vac and was anxious. The ICU really messed with her mind. She wasn’t even bleeding that much and had been through a ton worse than a bit of bleeding. It has to be the post-ICU syndrome; she’d never been like that before. She’d called the nurse, but he hadn’t come in for a while. When he finally did get there, he noticed the bleeding had picked up a bit. He paged the NP, and when he showed up, he came with a wound vac dressing change kit. I guess the surgery team trusted him to do the change. The rest of the morning was loud; we had a new neighbor, and the young LVAD patient was gone. An elderly man who was groaning, then screaming, had replaced him. Our nurse had his hands full the rest of the morning in that room. Eventually, that neighbor was moved back to the ICU, and we had a replacement as soon as the room was cleaned. 

I pushed a bath again, but Amanda was anxious bout it. We compromised on an in-the-bathroom chair, a towel bath. The care partner was a sweet girl, and I knew she would do a good job. She came in with another care partner to help. I helped get things arranged and got some jammies out. Amanda wasn’t really wanting to put them on, but I pushed, I knew she’d feel more normal, more human, in them. They did a great job and used a shower cap to wash her hair and even dried it with the hair dryer we had stashed in our dresser.

The evening was going well, but Amanda wanted to be in a hospital gown to sleep in, but I balked. She figured it would be a pain when we’d boost her up into the bed, and thought it would bunch up. When I went to help her get into the gown, I noticed her right breast was swollen badly, twice, if not three times, the size of the other. Her right arm had been bigger, and now it had migrated to her chest. Make it the third time we’d see the night NP. Since her skin was pitting, they just assumed it was the fluid building up there after a two-day break from dialysis. They ran labs to check things out just in case. The thought was that Monday dialysis would help with the issue.