Wednesday was a busy day. Amanda had dialysis first thing, as is typical; they got her before I was there. This time, I came to the hospital instead of going back to the apartment. I needed to chat with anybody who came by; it was discharge day, and I didn’t want anything to mess up our release. I was working on the last post and talking with whoever I needed to as they stopped by. We were still waiting for the official confirmation that they have a room at the rehab hospital. I coordinated with Amanda when she was getting out of dialysis to run and get her a taco.
After I got back, I had a call from an unknown 615, Nashville, area code. It ended up being the greeter for the church I’d swapped numbers with. She was just calling to check on me. She had thought of me, lost my number, then remembered it was on the dresser upstairs, she said! I talked to her for over 15 minutes, she was so sweet telling me that they just already loved us! She said if we needed anything, from a ride to the hospital to a meal, to let her know. If she couldn’t do it, she’d find someone. Another 615 number rang while I was talking to her. Thinking it was a hospital call, I called it back after I was off the phone. It was the lead of the intercessory prayer team calling from a prayer request put in for us. He was an older deacon, 80 years old, he proudly said, who couldn’t read the card, saying he could only make out husband something or other! I talked to him for a while, as well. I didn’t even fill out a visitor’s card, and I’d already conversed with a member of the Sunday school class via email and had two phone calls. Needless to say, their organic outreach was pretty good. I may have to beat them off if I fill out a visitor’s card!
Amanda felt pretty rough after dialysis, but she still got her Torchy’s taco down. The rehab doctor and a resident from the rehab hospital came by. It is called Vanderbilt Stallworth Rehabilitation Hospital, but it isn’t a Vanderbilt property, even though it is almost connected and directly across from the children’s hospital. The docs were going over things about their admission. They missed a few things, like the knee; they didn’t even know about it. Amanda was filling them in on things as they asked questions. She was having a hard time and missing things, so I popped in and out, explaining things. By the end of the intake questions, the doctor asked if I was in medicine, no ma’am, I said, just hers, as I looked at Amanda.
This isn’t a story I would usually share. I don’t want to seem braggadocios, but it was sweet, so I want to share. I’ve been going to the coffee shop in the hospital lobby for a while. I chose to go there when Amanda didn’t want StarBs or when she was out, and I didn’t want to leave for too long. There are two baristas, and to look at them, they look like opposites; one wears light colors and is bubbly in a quiet way, the other wears dark colors, and she seems a little somber. This was my first impression anyway, with just the normal, ‘I’d like a triple shot honey oat milk latte,’ kind of talk. They got to know my order and we also began to chat a bit while waiting for my latte. I told them about Amanda and how we were here temporarily. They would ask how she was doing and how much longer we had as the weeks of me getting my latte dragged on. The one who wore the dark outfits really opened up and was more talkative than the other. After I told them the area we live in, she mentioned how she lived close to there. In conversation, she told me of a bagel shop they’d both liked that was close to me. I’d planned to get them bagels one day, but one would be gone or Amanda would be NPO or something, always got in the way. On our discharge day, I decided it was the right time, and I got them a half-dozen bagels, dropping them off when I got my morning coffee. It was high-pitched squeals from one, and the one I’d pegged to be hard at first immediately started crying. I had to step into the gift shop next door to keep from tearing up myself after her reaction. When I came back, the one who had taken my order, well, put my order in since she knew it, was already in the back, fixing herself a bagel! I’ve met so many people here in Nashville and made so many connections with people of different walks of life. It was a sweet interaction and a lesson in the don’t judge a book by its cover category.
After lunch, I packed the room and made a run to the car to rearrange things to be able to fit the dresser, cart, and bags full of stuff. I’d asked Bev to come by to watch Amanda ring out and to help get things out. She showed up just before they arrived in the van to transfer. Amanda was finishing up some meds, so she wasn’t ready just yet when they showed up. I helped her get dressed, and then it was time to leave. The nurse asked if she wanted to just walk to the bell since it was close. I was in the bathroom backing up her toiletries and getting a command hook off the wall, I popped out and said, “She’s ringing that bell standing!” When the nurse came back in, she said there were a ton lined up to send her off, mentioning even some providers were there. I got the feeling it was a bigger crowd than usual. Bev walked out to get a video of the whole thing and got cheered on herself. Amanda and I walked out, and the hall was lined with nurses and care partners; there must have been 15 or twenty, all waving pom poms, cheering her on. I held back and let Amanda walk to the bell and ring it, joining her afterwards. It was emotional, I wasn’t balling, but my glasses did fog up from all the tears!
Here’s the video: https://www.facebook.com/share/r/1FDUdFb7R4
They didn’t transport her in an ambulance, but rather in a wheelchair-accessible van, since she was mobile enough to travel that way. As they transferred her, just down the block, Bev and I got the rest of the room to the Yukon. The dresser fit perfectly, still loaded in a big wheeled cart, before the transplant in anticipation of packing the old room out. We had it piled high, and Bev carried a few things. She stayed with things at the entrance while I got he car around to pick it up. Then we made our way to Amanda’s new room. The room was a double, but without the second bed, so it was very roomy with so much room for activities! We arranged the dresser, then I decorated the top of it with Amanda’s prizes I’d been waiting for: a new semi-anatomical heart plushie and the Tennessee Heartiversary photo book I’d made weeks ago for inspiration. I arranged things to the tune of Bev saying, “Aww, isn’t he cute?” as I moved things around!
As we were packing and moving, Lt Dan, the father of a lung recipient I’d gotten to know, had texted a few times. He wanted to know if we had gotten settled, how things were, and he was headed to Hopdoddy later, wanting me to join him if I could. I never text back because I was busy and noticed the last text from him saying ‘ok now I’m worried’ since I hadn’t responded in a few hours. With Bev able to hang out with Amanda, I went over to give Dan and Brett a debrief and show the ringing out pictures. As soon as I sat down, I hollered to Brett, “She’s out,” and showed him a picture. He responded with a big “hell yeah, man!” Hana, the relief bartender and my next favorite behind Brett, was just excited when I showed her the picture. Dan was busy talking to another patron I had met a while back but hadn’t seen since; she had a big hug and congratulations for me, as well. I chatted with Dan for a bit, then left to go back to the hospital.
Bev hung out a little longer, and we all chatted. After she left, I got the room all situated. Then I grabbed dinner from a dumpling house. All of the typical restaurants we eat from are closer here at the rehab hospital. I waited for the schedule before I left and helped Amanda get settled. It was a while before we got he next day’s schedule, late in the evening. She was scheduled for speech, OT, and PT all back-to-back, over three hours, with nothing in the evening.
I got there Thursday morning after the speech session. They had cleared her and did a few cognitive memory questions, which she missed, she said. On the way in, I grabbed a bagel sandwich for Amanda and some coffee for myself from the shop I’d grabbed the barista’s bagels from. PT was the first on the list after speech. They did an assessment in bed to see how she did moving herself around and turning on her side. Then it was a wheelchair assessment to see how much she could roll herself, followed by a walk. We made it to one of the gyms, and they showed us a few things. There was a set of stairs and a car simulator on how to get in and out to see how she’d do and to practice before we are discharged.
We had a short break, then OT came by. They did their own assessment, including the cognitive memory questions. They told her three words and said she’d need to remember and repeat them later. She only got one right. They hadn’t done any assessments like that at the hospital and just showed me how bad she was. It also made me wonder why there wasn’t anything like that done in the hospital. After that, they got her up for a shower. I had to be assessed to help with showers, and ended up giving her a bath with four of us in the bathroom at once. They praised my hair-washing skills, but I’ll be doing all of this once we’re out, so I don’t care to do it when there are a ton of people to help, much less with them watching. They also had to assess me to see how I did with getting her up and transferring her to the chair, which would give me the check-off to get her up and walk with her or transfer her to the bed or toilet. I passed with flying colors, but it made me laugh. I’d been getting her up for a month and had her up and walking and to the bathroom here the night before anyway.
The kidney doc came by to see us; she was one from Vanderbilt, and we already knew her. I mentioned how Amanda was already peeing a little more. She is on a fluid restriction, but we haven’t gotten too close to it yet. This doctor told her not to worry about that, and if she was thirsty, to drink. I asked about the recovery of the kidneys and whether the rehab would help, remembering an NP saying she had seen the most bounce back at rehab. This doctor did not concur and said it just happens when it happens, and sometimes they just don’t recover.
After lunch, we took a walk on our own. Then in the afternoon, I went to see Brett ‘ring out;’ it was his last day at Hopdoddy. I’ve enjoyed being able to go and talk with him; I’ll miss our chats. On Wednesday, I’d caught him at a place next door to Hop when I was leaving. We chatted a while, and I offered some relational advice for some things he was dealing with. I had to shed some big brother advice, well, I guess fatherly, but I see myself as the cool older brother, more so than a father! He told me, ‘Thanks for the advice; it worked out and was the best thing to do.’ I was glad I was able to help and to take the higher road. I guess from nearly 23 years of marriage, I am qualified to offer such advice!
I have been noticing Amanda’s cognitive decline since we got here. It doesn’t seem to be getting better, which is a little concerning. She has been wanting to walk and asking me to go for a walk more than at Vandy. I’ve been getting her up and down more, too. When OT came, they said for me to get her up for more practice, but that’s what I don’t need; I’ve been doing it for over a month already. I have really done my back in too. She was getting up better, and I hadn’t needed to help much, but she’s left me hanging a good bit, and I’ve had a few jerks when she just quit helping that hurt me. Sometimes it’s like she just forgets how to get up. After our walk, I got pizza from a place close by. Amanda was a little confused by the different slices I’d gotten. It’s the little things like that showing how bad she is cognitively.
Friday, when I arrived at Amanda’s room, I noticed that he was passed out with pills on the table. They had given her meds, then she just fell asleep, not taking them. Then the nurse came in with more. Since Amanda was woken by both of us, she wasn’t in a good mood, and I came off as abrasive getting her to take her meds. She had argued with the nurse about some meds she thought she’d taken. Turns out they called the night nurse to confirm she hadn’t taken them, but she still thought she had. There was some other confusion about what pills were what, since there was a bigger pill that Amanda didn’t think she could take. There was another bigger pill that we knew Amanda couldn’t take too. It was in powder form at the hospital, and had it swapped the day before. We questioned the nurse about it, and he was a pill himself about it. I wasn’t having it because I told him about it the day before when he mentioned the change was coming. I told him we’d need it changed, but he didn’t want to bother with it then. He kept saying he’d need it changed, so I finally told him the obvious: Well, you need to call whoever changes it then. I really didn’t care for his attitude about things.
OT was the first to happen on Friday, and it flanked a double PT session. The PT was from New Mexico, but her parents were in West Texas, so we had a lot to talk about between the Texas towns she knew and all of the New Mexico towns we’d been to and whatnot. Amanda was peddling away on a bike thing and ended up doing a few extra minutes because the PT and I were talking a bunch. Amanda was really sleepy and falling asleep badly; she had taken a larger dose of her sleeping medicine, and it was obviously too much. I mentioned to the docs when they rounded about Amanda’s cognitive device since we arrived, too. There is a resident therapy dog, Gus, who comes to work alongside his mom. Amanda got a little loving from him on a break. They are very dog-friendly here; all the sanitizer pumps have pictures of a dog and a cute quote from the dog pictured about using sanitizer! After she did her back-to-back PT sessions, they had her go for a long walk.
We waited a while for the last OT session. I would wake Amanda up as she’d fall asleep, and she’d get mad at me because I was loud. I told her, Well, I have to be to wake you up! The therapist came in late because she was stuck in the shower with another patient. She was sweet and ended up traveling a lot of the same spots we’d traveled. When we talked a bit, she opened up once she realized we were Christians. She said she doesn’t talk about that much until patients bring it up. She and her husband had traveled to a few spots we wanted to go to, as well. It seemed as though we’d get along great as couples traveling, she even mentioned her husband and I dress alike, as I showed her our Tennessee Heartiversary photo book. As she looked at the book, she kept telling me, ‘Amanda, this is why you need to get better; this is what you need to work on!’ She was showing us pictures of their travels to Banff in Canada, a top spot of mine, and on our travel list for 2027, when we’ll be celebrating our 25th wedding anniversary. The OT said this will be you, Amanda, on that trip, showing her a picture of herself next to a beautiful lake with the towering mountains in the back. This is what you need to work to, she exclaimed!
Dialysis was in the afternoon, but there was barely time for lunch in between. I went home after Amanda went back. I’d found a massage spot close to our apartment when I was looking at the map for a nearby post office. They ended up being cheaper than the other spot I’d been to. I got a quick 20-minute chair massage since my back was hurting pretty badly. I went to the apartment for a bit afterwards to decompress.
I grabbed dinner on the way in from P.F. Changs. It’s been a spot where Amanda can eat their food pretty well. Her tummy has been having issues, and I had instructions that I needed to stay around for a while. After dinner, we played on the Xbox, and that was when the cognitive issues were very noticeable. She’s not great at video games; typically, anyway! It was much more exasperated now, though. Very noticeable compared to a few days ago. Her slowness, outside of the game, is frustrating. Amanda is bright, and this is not her; it’s hard to watch.
Amanda will stand well one minute, then not the next. She gives a false count and does not go on three, or just makes no effort when getting up, which puts a terrible strain on my back. She was getting up much better before we were there. I assume it’s just fatigue. As I was helping her up, she just gave up, only a little way into the stand after she had initiated the stand well. It gave me a jerk and really hurt my back more than other times. It was acute this time, a sharp, immediate pain. I was mad, I know I should have been, but in the moment, I was mad. I told her enough with that, threw the walker out of the way, and just yanked her up to a standing position without her assistance, but from a better posture to protect my back.
I was hurting and angry because of it all the way home. It was late, close to midnight, too. I went down a street I occasionally use, through an agricultural center. The gate at the ag center was closed. Since I had to back up the wrong way a half a block to get the boat of an SUV we own around to the top way back around, it only infuriated me more! It was a frustrating night for me. I took some pain medicine when I got home and lay down quickly to help ease the pain, hoping a decent night’s sleep would help.