Busy Waiting

Even though I sleep through most stuff in the hospital room, I’m not sure I get quality sleep. I hear a lot and don’t get up or move. The cardiologist came early for rounds around 7 Sunday morning. I didn’t wake and don’t remember her and the NP coming. Amanda said the cardiologist, when she was done, said, “He slept through all of that!” Amanda said she told her I sleep like a bear! Though I don’t remember that, I think I do wake up because I can tell the difference when I sleep soundly at the apartment.

The sound comes out of the call button in this room. Amanda doesn’t like it when they do that. The only reason I would think they do it is to keep the hard-of-hearing from blasting the TV sound and disturbing others. I can usually remedy it, and sometimes it’s input-specific, but our FireStick was still through the call button. I ordered a cheap universal remote to remedy the problem. I figured it was just a setting like some others. I was wrong, and it led me to pulling cables out of the back of the TV to fix it. Still nothing, except creating the problem of plugging the odd-shaped cable back in with little room to do so with big hands. I finally succeeded in plugging in the cable, but no luck with getting the sound out of the TV!

They took Amanda off early in the morning for an ultrasound of her leg, a routine check for clots. We didn’t do much through the day, just watched movies. Amanda is still having a little anxiety and wants a level playing field, she says. She doesn’t want any weird or crazy movies, nothing with too much action, nor anything scary. Scary movies are her thing, too; she usually loves them. So, we’ve been watching a bunch of cartoons and kids’ movies, which she never likes to watch. I’m always the one wanting to watch animated movies, but not her! We did watch one of my childhood favorites, Heavyweights. Maybe it was because I was a fat kid or because we watched it all the time with substitute teachers! In 8th grade, if a cart with a huge TV was rolled into the room, it had Heavyweights on it.

It’s so much quieter here on the step-down floor. We have the noisiest room, I’m sure, but it’s still pretty quiet. Our room is the first one when you walk into the unit, so we get to see all the action. We like to keep the curtains and door both open, so it’s louder because of that. I can’t imagine being cooped up with them both shut, it’s claustrophobic enough in a hospital room. I got Chipotle for lunch, walked a mile round trip to find out it was wrong. I drove back down there and wasn’t anywhere in the mood for the lady to give me problems. I wasn’t having it and even had to get her to fix the order she fixed! And she wanted to argue with me about how it was right when I had a receipt that showed clearly who was in the right, me! She must be a problem child; one of the other workers kept telling her to calm down. She rubbed me the wrong way when I picked the order up by not having the names of the orders facing the customers, and would scream “Name” when anyone touched the bags! This isn’t the ghetto around Vanderbilt. I don’t think that too many people were just stealing bags from there. Houston Med Center is a different story!

We called the nurse to come in to change a dressing on Amanda’s groin. One of the access sites from the surgery has been watched by wound care for the last week or so, but has been oozing badly. Ten plus dressing changes a day, it’s very annoying for her and the nurses, I’m sure. While the nurse was in, she told us about how Amanda was going to be NPO after midnight because they were going to put in a filter in the cath lab because of a DVT, deep vein clot, they’d found on the morning ultrasound. I had too many questions for the nurse, so I asked that the NP come by so we could chat. Amanda was super anxious after she thought about lying flat again. She’s had a rough go of it the last few biopsies and was almost in tears thinking about it.

The NP finally showed up and stayed a while. I laid out the anxiety issues and the access issues as well. She explained things as best she could; some of it was new to her, so she had just learned a lot about the filters. I’d already googled it as the nurse told us. I knew it was going to be an IVC filter, the opposite of the SVC, which Amanda had reconstructed in her first transplant. The IVC is where all the blood from the lower extremities enters the heart. The filter was designed to catch the clot before it could reach the lungs. Let’s just say it would be bad news if the clot made it that far. The NP was going to make notes on the anxiety and try to get Amanda something to calm her ahead of time, and to request that they give her extra meds during the procedure, and also let them know of the access issues. 

Amanda was feeling like a salad, so I grabbed a kids’ salad for dinner from a salad place similar to Salata back in Texas. She ate a little bit, but she’s still not eating much and is pretty picky about what she can get down. I was planning on going to the apartment, and the later it got, the more anxious she got about it. She had some palpitations and was concerned about that, so we called the nurse. She let the team know, and they checked her monitor. It looked as though she had a few PVCs, early contraction of the ventricle, but nothing to worry about. They didn’t even want an EKG or labs. Things aren’t as expedited around here; not everything is a let’s get to it mentality of the CVICU. I think it’s taking a little bit for her to adjust to that. It’s just a little too much change for her, all at once. She did calm down a bit later in the evening, and I was able to go to the apartment to sleep. Although I didn’t leave till after 10, I didn’t get much time there because I had to be back early for rounds with all we had going on for the filter placement. 

With a couple early alarms set, I did not want to get up this Monday! I was dragging and didn’t want to get out of my comfy bed! Rounds ended up being over an hour after I got there. Being at the front of the unit, we were first on the list, though. The cardiologist was the one who had rounded on us a few weeks ago, along with the fellow and the pharmacist; so, we had a few familiar faces along with our nurse, too. We see all the traffic in and out, so we’ve had a few nurses and care partners pop in to say hi. It’s been nice to see ones we know and like. It feels good to have so many pop in and say hi.

The cardiologist was the one who never set foot in the room; he left that up to the fellows. This time, in step down, he came in and did a thorough exam along with the NP. I was locked and loaded with questions about the filter. Number one was it necessary. He said they opted for the filter over blood thinners because of all the caths she would be having over the next few months. Blood thinners wouldn’t be a good option and are hard to just come off of for a day for procedures. It wasn’t going to be permanent either; it would come out in a few months. The next was the access issues, along with a few others. I even had a question for the pharmacist today.

When they were rounding in the hall, I overheard one interesting, no mind-blowing, thing that they talked about. As they covered reasons why they treated her early for the AMR, antibody-mediated rejection, they mentioned something about her old heart. We knew she had part of her old heart when they did the EP study and ablation back in Texas; a piece of her old heart held a normal rhythm, while the new heart had its high rejection rate. That’s mind-blowing enough, but that part of the old, original heart is connected to the first transplanted heart and is connected to the new heart. So, she has pieces of three hearts in her now!

We saw our neighbor from the CVICU today. She stopped by and spoke to us for a bit. Her husband was on dialysis, and she was coming back from getting a coffee to have a break. I did learn from her that the dialysis didn’t happen in the room, and the family can’t go where they do it. I’m sure she needed the break for a bit. I know the feeling. Her husband has had a rough go of things like Amanda. He had his transplant a couple of days after Amanda, but he still can’t walk and still has a feeding tube. So even as rough a time as we’ve had, it could be worse. I feel for them. He is doing better, but will eventually need to go to a rehab facility after the step-down unit. They could use some prayers as well and their names are Jerry and Evelyn.

We hadn’t heard much from in the way of PT coming by, so I took it upon myself. I asked the nurse to find the upright walker, and that I’d need someone to follow with a chair just in case. After she got Amanda’s 10 am pills ready, she helped me get things ready. I’ve been getting Amanda up myself, helping her get to the bathroom instead of using the bedside commode. I don’t ask, this isn’t my first rodeo, I just do! I know how to move the lines, make the monitor mobile, and whatnot. I’m a little more like PT than a nurse. I make her work for it, standing up and getting her legs in bed; she’s got the strength and she needs to be pushed sometimes to use it!

The day consisted of waiting, waiting on both the cath and dialysis. I’m pretty vocal about my disdain for the way the cath lab scheduling goes! They put her NPO all day, and she won’t get to eat till late in the evening after they decide she won’t have the procedure. She’s had only one cath or biopsy that was on the scheduled day since we’ve been here, and I let everyone know that’s how it’s been. The dialysis session was scheduled, but we didn’t know when, and then we were told on the third shift. So, I was thinking in the afternoon, but they came back and said 7 pm. That’s pretty late with a 3-4 hour dialysis session. When I heard the time, I knew I wouldn’t return. I’m trying to sleep at the apartment every night. 

They finally pushed the cath so Amanda could eat, and I got her some soup late in the afternoon. She is eating better now and ate the entire cup of soup and some bread I got her from the Panera in the lobby. That has been good for us. I signed up for a couple of months of free “Sip Club.” It’s a drink subscription where you can get a drink every couple of hours for no cost. For free, it’s great, but even at the $15 monthly cost, it would be worth it for us while we are here. I’m sure all the nurses have it. I’ve been getting a few drinks a day from their flavored lemonades to teas. Amanda likes their broccoli cheddar soup, so that’s been our go-to for a while. 

Pills are the most significant battle for Amanda right now; she just hates taking them, and there are so many. She is just miserable taking them about 5 times a day. One medication they upped the dose from 1000 to 1250 mg. She took two pills for the 1000 dose but now has 5 for the 1250, all 250s and no 500s. I requested that they keep the 500s and add one 250, not to have so many pills for her to take. The transplant pharmacist rounds, so she was able to put in two orders and make it come out right. Another one they added is a horse pill; it is gigantic, so it has to be crushed for Amanda to take it. She puts it in apple sauce, but it makes it thick and taste bad. She also has a few liquid ones to take, which she has issues with. She just can’t throw them back to get it down. Her lack of taking shots in her younger years is showing now! 

In the afternoon, I snuck off to Hopdoddy for a bit. I knew Brett was heading out on vacation with his family to the Dominican Republic on Tuesday, so I went by to have a happy hour beer and sliders and chat with him before he left. He’d just quit one of his other bartender jobs at a brewery on Music Row and was going to start looking for a “big boy” job when he got back from vacation. The minute he clocked out, he was in vacation mode, I could tell and knew the feeling. A feeling I was getting used to in the years after the first transplant; I’m ready to get back to all the traveling again!

We were waiting after that for dialysis. It was pushed to 7:30, then they never showed up, so we waited and waited. The nurse called to check up, the line was down, and as she was about to walk over and get word, they called and were about to put in for transport to come get her. It was after eight by the time they came to get her. I can’t go with her for dialysis, honestly, it’s a forced break that I could use. They have a nurse who monitors her constantly, and not much goes on during the session, so it’s a good time for a break for me. Amanda had asked what my plan was earlier in the day while she was gone for dialysis. I think she wanted me to be there to get her ready for bed, but I pretty much told her I wasn’t coming back. I knew it was going to be midnight before she’d be back, and there was no way I was going to just sit around the hospital and wait just to tuck her in and go to sleep in a chair. What she doesn’t realize is I’ve tucked her in for about 35 nights already, and it’s now time I get some decent sleep. I know it’s crappy timing, but we have an apartment, and this is a marathon. I’m already burned out; I don’t want to be completely burned out by the time she gets out of the hospital. 

After they whisked her off to dialysis, I left, but with a pit stop for the open mic. Brett wasn’t there, but Jordan is a fixture on Mondays. She is there from 5-9, singing away unless someone else shows up. She had a partner playing the piano who showed up a few weeks ago to play along while she sang. They made a good pair; he did sing, so it wasn’t the duet Brett and her do, but the piano was a nice addition. I got there so late that I only heard a few songs, then left. Jackson from Hopdoddy was there, so we chatted a bit, then I dropped him off at his apartment on my way to our apartment. I got a few honey-dos done around the apartment. I need some decent time to get a few things done around there, and not just little spurts. After piddling around, I went to sleep.