Saturday morning, my first mistake was going to Chick-fil-A. I left a little later in the morning to catch Amanda after she got out of OT. On the drive in, I saw countless soccer teams playing in church and school yards. Everyone else was apparently getting chicken biscuits! The store I typically go to has no inside seating, and the drive-thru line seemed to wrap endlessly around the building. It’s Chick-fil-A, it shouldn’t be a problem, I thought. To make it in line, you have to cut in front of the pickup window, a few must have been inpatient and not let anyone out. It was grid lock and mass chaos, and I spent 30 minutes trapped in line with no escape. It’ll be ‘my pleasure’ to skip that line on soccer Saturday mornings from now on!
When I arrived, Amanda was already back in the room. During OT, they worked on things like a puzzle while standing on a mat that kept her moving around to help with balance. They work primarily with the upper body, too. Doing exercises with light hand weights. After she finished the breakfast I worked so hard to get, we played the Xbox. Since we’ve been here in rehab, she has cognitively declined a good bit. We’d finished the game we were playing, so we swapped characters and started over. The mental issues were glaringly obvious when playing the game. I was getting frustrated just watching her. She has a hard time remembering things from just a minute ago and couldn’t learn from her mistake in the game when she’d replay the scene just a few seconds later. I’m not sure if this is the best test for her, bless her heart, but she’s not that great at video games anyway! Either way, she’s not doing as well as she was at Vandy. Also, a friend had mentioned she’d sent some texts that were gibberish and didn’t make sense. That wasn’t as concerning. I’ve watched her sit on a text screen, falling asleep. So I assumed it was just when she was tired.
PT was right after lunch, nothing special or new. It was an older man who was somewhat lackluster about things, but he was experienced and offered a few good pointers. Men PTs aren’t the norm here, and nor is the more experienced crowd. I’ve only seen a few over 40, much less nearing retirement. After PT, Bev showed up with a TJ Maxx workout clothes haul. I mentioned to her that Amanda would need a new wardrobe of warmer and smaller items. She took it upon herself to bring in probably 20 plus joggers and tops for Amanda to sort through. Amanda made a preliminary sweep through them, nixing a few. Bev found out how picky she is! I was able to cull a few; we’ve shopped together enough for me to know what she doesn’t like. Secretly she was wanting Amanda to bounce some, she joked ‘Well, I’ll just keep this one,’ while she smiled at Sam! They stayed a while. We all chatted for a bit Sam drifting in and out of a nap with Bev prodding him as we three laughed at his expense!
We had dinner in the evening and then went for a walk. I’m still getting her up and walking, just not as intensely since PT is working her hard. I have seen no one walking the halls like us. Amanda has actually asked to go for walks, so it’s not just my slave driving keeping her up and going. She wants to be independent so badly. The only ones in the halls I’ve seen are a few in wheelchairs. Most of which who seem to be here pretty long term recovering from bigger injuries, I would assume. This is a new scene for us; we’d been to plenty of PT sessions after Amanda’s knee replacement and subsequent redo. This facility is helping people get to the point where they can take care of themselves after becoming wheelchair bound or learning to walk all over again. It’s pretty intense here, and sad to see the shape some are in.
Sunday morning, I didn’t go in early; I used the time to sleep in a bit, and I went to church. I didn’t sit in the car, milling time away as I did on my first visit. I knew people now, so it wasn’t going to be as weird. I felt welcomed on my first visit, and after a second time there, I felt accepted for sure. There was a different leader this time, I think they alternate teachers each week. The one teaching this week seemed like she had a hard shell to crack. A retired teacher, I assume, not using the quarterly questions but making her own lesson plan and questions, which were thought-provoking. She reminded me of my kindergarten teacher, Mrs. Richardson. I can’t believe I can still remember her name. If you misbehaved, she’d have you put your hand on her desk, then she’d draw a yardstick as if it were a sword, and whack your hand. It was a good deterrent, but I was pretty stubborn and hardheaded; I had my fair ruler imprints on my hand under her reign!
I was asked by many in the Sunday school class about Amanda by name, most, if not all, saying they were praying. The class was over a good bit before church was to start. I milled around a bit, then found a seat. In the auditorium, I had many come up and greet me, asking how Amanda was doing, and many more greeted me as a new face. The service was good. I enjoyed worship and felt comfortable with the congregation. The message was good, a second part to the prodigal son parable. It was a self-proclaimed hard message according to the pastor, but from the preaching I’m accustomed to under YJ, it wasn’t that hard. I don’t like soft messages anyway, like to get stung now and again! I felt at home with the church the week prior. I was pretty sure this was the church for us, but after this Sunday, I was sure this was where God wanted us while we are here. Amanda is going to get out of rehab and have some catching up to do with all the connections I’ve already made, plus a church family on top of that!
When I came in after service, I was bearing soul food, the spot I found may become a regular spot for us. In tow, I had a puzzle of our own and a printer. Amanda needed to get some work done. She needed to print a few things, but she hadn’t emailed them to me yet, so I just took the printer to her. We worked on the puzzle, though not many pieces; it was freeform and was beyond what she’d be capable of. Or me, for that matter, I don’t have the patience for puzzles. Where I can obliterate Amanda in video games, she destroys me in puzzles and makes me feel like an idiot. Where I am weak, she is strong and vice versa! Much of our relationship is like that; it’s why we fit so well together.
Monday came early, just after 4 am to be precise. That is when I got a call from Amanda. I knew something was wrong before I answered the phone. She’d had a high rate that lasted a few hours, and after an EKG, they were taking her to the ER. I could tell she was nervous. I told her to let me know where she landed and I’d be right there. To be completely honest, I wasn’t that worried. Number one, 4 am calls don’t scare me. After 22 years of railroading, I can wake up from a dead sleep and be ready to go in no time flat. Number two, after the amount, I’ve been woken by Amanda not doing well and needing to go to the ER, I wasn’t fazed either. Also, she has had these runaway rates a good many times since the transplant. Nothing ever big happens, and it settles down. I see it as the heart wakes up in a new location and wonders what the what is going on! Lastly, the ICU made me hard. I thought I was a veteran at caretaking until a month there. That wasn’t anything like the couple of months we spent in the CVICU in Houston when all of this started. It was a hard month, the hardest of my life the month after this transplant in the CVICU at Vanderbilt. I’d almost lost her years ago a time or two, but I’d never been that close to it before. I’d never seen a whole team busting through the doors in the wee hours of the morning, paddles connected quickly, with a doctor screaming at the top of his lungs to take the defibrillator off auto, while we all waited. Needless to say, I wasn’t too worried; if God got us through all that, we had this. Not to say that I wasn’t praying on the way in, but I was praying with confidence. Standing on the side, I’ve seen worse, and I know you’ll get us through this, God, calm Amanda, and let me exude your confidence when I get her side.
When I arrived, her heart had already calmed down, and she seemed to, as well. The nurse had grabbed blood for labs. Thank goodness they got it from her IV, and didn’t have to stick her. This IV is about 3 weeks old and still draws back, a record, I’m sure. She’s had midlines that have clotted off and not drawn back sooner than that. Seeing a syringe of blood next to several filled vials, I asked the nurse if she had drawn one for a Tacrolimus level. That is the main rejection medication, and to measure a trough, the lowest level of the medication in the bloodstream before the next dose is taken, it needs to be drawn between 5 and 6 a.m. It was right between the two. She didn’t even wait for an order and just drew it and had it ready. I liked the initiative; they needed to check that level, and she knew it. When she asked, it must have stirred them up as if they didn’t know she took it. A pharmacist showed up not much later, asking about the timing of the Tacro at the rehab hospital. Then the nurse showed up quickly with a dose. I can be a thorn in a nurse’s side, I know that. I come off as abrasive; my size, tone (as I’m often reminded by Amanda), and demeanor all don’t help sometimes. However, I can be a valuable tool if they don’t make me mad!
Amanda was tired; she wanted some light but not too much. It was an ER with no windows, and either bright light or none at all. The nurse left the light on, and I convinced Amanda to let me turn them off. She was promptly out after that. I popped my AirPods in, wiggled around in my uncomfortable ER chair, and settled in. I started a new audiobook, one on caretaking. It is written by Bruce Willis’s wife, who has FTD, an aggressive form of dementia. I already learned a lot about dementia in the first chapter of the book. I saw a quote from her, “I feel like caregivers are so judged, and it just goes to show that people sometimes just have an opinion versus really having the experience.” Boy, did I feel that one. Until you’ve walked in a caretaker’s shoes, it’s just an opinion and not experience. Each of us is uniquely different in our own regard. From the disease of our “person,” as she sometimes refers to her husband, which I liked, and in the ways we cope. After seeing the quote, which was from her book, I knew I had to get it. After looking for others, more Christ-centered, I realized that must be a niche market and may be where I’d fit in. I’ve been poked, prodded, and pushed hard about writing a book. A shorter caretaker book may be where to begin.
Amanda slept for a while, a good kind of sleep. I let her and didn’t bother her at all. The nurse, after the shift change, had a sweet, soft demeanor and let her sleep as well. The team must round in the ER first because they were there before 8 am. I knew the entire team from the fellow, who we’d had for a few weeks after the transplant, both the pharmacists, the NP, and the cardiologist. The cardio was one I really liked. She is sweet, takes time to answer questions, doesn’t speak down to you, and hangs around to make sure you’re satisfied with her answers. She is also about as tall as I am when sitting straight up in a chair! She walked into the room and said ‘I remember you’ looking at me. Her tenure in our CVICU stay was when Amanda wasn’t doing great. So, Amanda didn’t remember her so much.
They did their assessment and came up with a plan. The EKG at the rehab hospital supposedly showed Afib, yet there was no correlating evidence. Not sure why they didn’t send that EKG with her to the ER. I think the team questioned whether their interpretation of the EKG was correct. Neither done at the ER showed that. I had seen the labs on the MyChart app, and I questioned the high troponin and BNP levels were both high. These can be a sign of a heart attack, so I was concerned. The levels can be high after a transplant, and they were trending down compared to previous levels, so they weren’t concerned and hadn’t even run the level since early in the CVICU. They were more concerned when the dialysis was scheduled, so Amanda wouldn’t miss it. That was my next question, I was also worried about her missing Mondays since she has been gone for two days without it.
Eventually, we were discharged with a heart rate monitor patch, which Amanda had had a couple of times since her first transplant. We were back to Stallworth before lunch, enough time for me to get Amanda lunch and for her to have a break before dialysis. I went to the apartment after they grabbed her. I had a four-hour break. I went shopping and grabbed some groceries, got a few things done around the apartment, then cooked dinner for Amanda. I sent Larry a pic of the groceries with the caption ‘About to make a righteous hamburger helper!’ We often text each other food photos. I had kamut pasta, heavy cream, bone broth, four cheeses, and a ground veal/pork/beef mix to whip together a protein and calorie-dense meal for dinner. Well, three cheeses, since I used a little Velvetta, it’s not really cheese, but I like the consistency it imparts for a good mac and cheese sauce.
Cooking is my happy place; I love to cook. It was only the second time I’ve cooked a full meal in the apartment. It is different going back to cooking meat and dairy; it’s been six years since we transitioned to plant-based. I enjoyed the cheating at first, but I don’t enjoy the way I feel now. I’ve packed on the pounds, eating out mostly over the last nearly ten months. Wow, I just counted that out on my fingers to confirm! Amanda was seen in November, then admitted in December, and we’ve only been in and out of the hospital since. That’s just crazy; we’ve been dealing with this for that long.
I had a good bit of dinner, I packed some extra in a throw-away container, and texted Dan, the father of the lung transplant recipient we met in step down, to see if he wanted some home-cooked food. It didn’t take any convincing, and he met me for a drive-by drop off at the Vandy entrance. Amanda approved of the meal, but she had given me instructions not to season it like I usually do! She can’t handle hardly any spice since the transplant, so I took it easy and only use a dash of pepper. After dinner, I grabbed a puzzle I had shipped to the Amazon locker close by. We worked on that for a while. Then went for a walk. On the walk, I got a text from Dan. He finally ate the dinner late, and the text read yummy for my tummy! After the walk, Amanda had been up for nearly an hour, with 45 minutes standing plus a short walk. She is doing well, but is a long way from standing on her own.
