The Long Haul

Monday, when I got to the room, I could tell Amanda wasn’t feeling good. She was nauseous and having a hard time getting her pills down. That seems to be getting worse. She also gets full quickly when eating and has been getting nauseous after eating. The cardiology was new this week. We still had the same NP, and he came in early before rounds. The cardiologist was a fellow last year and recently returned as a resident. The NP said he was tall and thin, and we couldn’t miss him. I could still almost see over his head, so not that tall compared to me, but he was beanpole thin! I liked him all right, but I’m not sure he enjoyed all the questions I had.

I was questioning ortho; the JP drains had slowed, almost no discharge, and the wound vac for the incision never collected anything. So, I figured it was time for everything to come out. I was also questioning the lymphatic drainage from the groin wound, which steadily puts out about 100 MLs a day. I figured it was time to have something done. Both of those did end up with the NP putting in for consults; it just took lighting a fire, which I’m good at! 

As I’ve mentioned, PT is lacking here at best 2 days a week. I fill in the gap, but I sure wish we were seen by PT more often. I think she will do so much better when we get to the rehab facility with constant PT. OT did stop by, she helped Amanda brush her hair. Amanda did most of the work with the OT finishing it up. I knew she was going to freak out about the amount of hair she’d lose brushing it. I had to keep reminding her it hadn’t been washed at all and only brushed a handful of times, and not to worry about the amount coming out. I referenced how I’ve already stopped the shower drain up and only washed my hair a few times in the apartment. She needs her toenails cut; I draw the line there. I’ve shaved legs and whatnot, but I’m scared to cut nails. The OT seemed just as frightened as I, so no luck with that. We talked with one of the PTs in CVICU about how someone needs to open a hospital nail and hair business. We should, I’d so pay for someone to come in and do Amanda’s nails right now, and I would have plenty in the past, too!

The OT helping did mention in rehab that the OT would come in the morning and evening to get Amanda ready with daily tasks like getting dressed and ready for PT and bed. After sitting up and brushing her hair, she was tired. We did walk after that, so she was wiped after finishing the walk. I think Amanda needs to feel less like she’s in the hospital and I told her repeatedly that she’s getting dressed when she’s in the rehab facility. I may move that up making her wear her jammies now against her will; she needs to get out of the hospital mentality, getting out of the gown is the first step. I’m planning to get her outside this week, too. 

Dialysis and a biopsy were both scheduled for Monday afternoon. I wasn’t worried about the biopsy; they never happen on the scheduled day around here. It is very frustrating; I’m sure they have more procedures than they can handle, but I get frustrated nonetheless. They are building a new cath lab to handle all the extra business. With breaking the world record with 174 heart transplants last year, biopsies for those alone would keep a regular cath lab going pretty good! As I suspected, the biopsy was pushed, and not even 10 minutes after they’d come to get consent. Dialysis was scheduled for 5 pm, and it ran late. A little after 6, I left with Amanda waiting to go back. I was going to help Brett work on his truck. We had a little swapping things around to do first to diagnose things. I’m not much of a mechanic, but I can make things happen when I need to. A jack of all trades, a master of none! I like the part that is often left out of that quote. It comes right after that the familiar part: is better than a master of one. I like it better with that addition!

We diagnosed the problem, and I’d already gotten the parts. I had a promo discount and a rebate gift card, so I was glad to get the parts for Brett, who was fretting bout the cost of the repair. We fixed it, and it was running great. He was so happy. I bet so, after he’d just ridden a Lime rental bike back from work, his face sunburned for proof. It was an answered prayer. I had been praying that it wouldn’t be anything too big. I was glad to help, and it made me feel good doing so, and having a small win outside the hospital setting. 

Amanda ended up calling and saying they pushed dialysis till 9 pm. We were still out test-driving the truck. I hadn’t planned on going back, but Amanda seemed to think I needed to go back. I was on the other side of town and told her I wasn’t sure if I could make it back. She was mad and told me to forget about it. I really didn’t want to go all the way across town to see her for a few minutes, plus I had been there all day and only left an hour and a half before I normally would have. To be honest, I could have made it over, but I’d just felt a little normal wreching on a truck and hanging out, I didn’t want to go back to the hospital for a few minutes just to turn around and get home late. They ended up canceling the dialysis, and it was pushed to Tuesday.

Amanda has been super sleepy, and all I’ve been doing is trying to keep her awake. It’s pretty frustrating for both of us. She falls asleep and doesn’t think she’s been asleep for a while, and gets mad that I wake her. She is having issues mentally and cognitively; she just isn’t right. Things that she’d never have issues with, she has problems with. You can just see her trying to process and think, but not having it together. She knows she is like that, too, which is frustrating for both of us. The post-ICU syndrome fits all these types of issues. We just need out of this place; it’s what we need to help her get better.

Tuesday was more waiting, from waiting for Amanda to wake up and take her meds, to waiting for dialysis and the biopsy. The tiredness was worse, and the battle of her fading and not realizing it continued. Dialysis was on for noon, and they came pretty close to then to get her. I left to go to the apartment for a bit. I ended up going to a Mexican place close to the apartment for lunch. It was good, but not what I’m accustomed to living close to the border. They did have some homemade spicy salsa hiding in the back, which I was able to get my hands on. Probably one of the few white boys up here to ask or even know they’d have something hotter than the tomato water that came out with the chips! 

I went back to the apartment after that lunch. I had the intention to work on some things; those were good intentions prior to lunch, but faded with a full belly. I was just about to settle in for a nap when Brittany called. I hadn’t talked with her in a while, so we talked for over a half hour. We talked about how Amanda needs a goal. When I arrived at the apartment, the photo book of our First Heartiversary was in. It turend out great and has about 40 pages of photos from that trip. I’d just looked at it before Britt called. So I had a goal in mind: go and do a short walk/hike for her October heartiversary in a couple of months in the Smoky Mountains. She hiked about an 800 feet gain trail to an alpine lake 3 months after her knee replacement redo, so I’m not worried about the knee. I think she will make strides in the rehab once we’re out of here. I wanted the photo book be a surprise at the apartment when she arrived, but I was thinking of taking it to her for motivation. Britt mentioned that as well, so I thought, well, I’ll take it to the rehab place and surprise her with it there. I’m also going to decorate that room with our travel pictures, too. I didn’t think we were going to be here so long, or I’d have decorated this room, but the stay just keeps getting extended.

During rounds, the NP talked about a PICC line since they couldn’t get labs in the morning. The IV team has been coming, but they can’t come at a scheduled time. The problem is Amanda needs labs between 5-6 am to get the trough level, the lowest level before the next dose, of her main anti-rejection medication. I was in favor of the PICC to keep from having to stick her so much. The nephrology team wanted a PICC to come out of the neck and not her arm. Amanda said with a whimper in her voice that she didn’t want a line coming out of her neck. I felt that would set us back mentally, too. It would make her feel more hospitaly, if that makes sense. I was quick to make the no line out the neck a hill I would die on, and I made it known. So, they were on to plan B and talking with other teams to figure things out.

In the late afternoon, we found that the biopsy had been canceled again. Ortho came by to check the leg and remove the dressings. Everything looked good, and they took the drains out and left the wound vac off. Some sutures would come out later, but the knee seemed to be doing well. I asked about the stabilizer brace. The surgeon said to keep it on for two weeks, but the resident, taking the dressing off, called and texted a photo to the surgeon, and he said the brace could come off. She bent it good afterward, but it was painful. I got her up to walk pretty soon after, too. She was weak and not very stable, but she did well walking.

Nausea is still plaguing us, and the swallowing hasn’t been good either. Both have gotten worse with her not eating. The on and off with the NPO, no food or drink, status isn’t helping either. Today is day three of NPO, lasting until late in the afternoon or early evening. The biopsy was pushed till today, and she’s back now for it. There was an upper endoscopy ordered to triple-check the swallowing issue. It was on for today, but they pushed it till tomorrow, so she’ll be NPO again until it’s over! The cardiologist asked if they’d done a calorie count for her. I told them about the ongoing NPO days and said Well, it’s easy to count on those days: zero. He got the hint and was like Yeah, I see your point. Yeah, let’s not worry about a calorie count when 3 or 4 days of the week you have her where she can’t eat. With the swallowing issue, she can only eat so much, so it’s not like she can cram enough calories in after 5 pm when they take her off NPO. They did an upper extremity ultrasound of her veins at 5 in the morning today. She did lose one clot in the right side, but another DVT had formed on the left, too.

In the early afternoon, Beverly came by. She stayed a while while we were watching The Nutty Professor, I don’t think I’d seen the movie since the 90s! She settled in to watch with us. I thought it would be good for her and Amanda to chat for a bit, so I left to get some lunch at Hopdoddy. I wasn’t NPO, but should be, the calorie-dense food I’m getting Amanda isn’t helping me! Brett had texted me earlier, so I knew he was working. He wanted to know if I’d be busy Friday night to go to a preseason Titans game with them. I’ve never been to a pro football game, so I wanted to go. It’s late in the evening, and I asked Bev if she’d come hang out with Amanda, too. I need a little normalcy. I’m wearing down physically, yes, but I’m a railroader, so that’s not an issue; I’m used to it. I’m wearing down in every other way, though. This has been such a straining hospitalization. It seems that with the added mental issues, it will be a long battle, too. 

As I was getting Amanda ready for a walk, PT and OT came by, perfect timing. I let them take the reins. I was a little perturbed that they didn’t trust me on the no leg brace, though; they had to call and check. The OT was familiar with the rehab facility and told us all about how things worked. One fun fact: there is a resident therapy dog, a golden retriever! They also have dogs come in on Thursdays. 

Amanda has been going downhill mentally since last week since the knee. It set us back in more than the physical aspect. Everything she’s having issues with correlates with Post-ICU Syndrome (PICS). Even the physical aspect, she mentioned, she just had a hard time controlling her hands today. She is getting frustrated. After looking up the PICS, I’m not as worried as I would have been. I know it’s going to get better when we get out of here. I feel we’re at a turning point; Amanda feels we are sliding backwards. I know she’ll do better when we get out of here, but she’s worried about a discharge, I can tell. I’ve seen her get anxious about a discharge from a long stay before.

We just need out of this damn place! Even if it’s another hospital setting. I’m not loosing faith in this recovery, I’m just frustrated. Neither of us thought we would be facing a recovery this hard, we weren’t prepated for this. Vanderbilt has a PICS recovery program. I called the number on the site, but it rang the pulmonary center, and they didn’t know how to transfer me. I was going to email the social worker, but she happened to walk by, so I chased her down. She’s going to look into things and get a psych consult. We need to get ahead of the cognitive issues. I think getting out of the hospital is half the battle. 

We are looking at the D word later this week or early next week. I’m ready for a change and the PTs to do the work so I can have a little break before she comes home with me, when all the load will be on me. It will be nice not to have to be here so early for rounds, too. I’m looking forward to sleeping in a few days. Britt is looking at coming up sometime in September. I know it will be good for Amanda, and I could use a real break.