Discharge?

I woke up pretty tired Tuesday. I worked on medical bills and a few other things, laundry, and whatnot before getting to bed Monday night. I was taking care of some things I’d left for another day last week. Finally, I had to tell myself, quite literally, “Barkley, eat the food you just picked up while it’s hot!” After I ate, I gathered a few regular bills to send to a foundation the social worker had told us about. We had met the founder and the foundation’s secretary one day, so it was nice to meet them, and I’m sure the same for them, to see the faces they get to help. The founder’s late husband was a Vanderbilt patient, and when here, they met many struggling people like us who were living out of a hospital and/or a hotel room. They have a meal fridge in the lobby here where they deliver prepared meals to heat up when needed. They also provide housing and help with bills to free up medical costs, which is how they are helping us with. They were going to help us out with a few things this month since we had the added COBRA premiums. I’m not sure exactly what the extent of their assistance is, but any help is greatly appreciated right now. 

I got to bed around 11 or so. I was tired and crashed right out. I’ve just been super tired the last few weeks. It’s all catching up with me, I guess. Being a railroader, I’m used to being exhausted. I use my away-from-home time to catch up on sleep. I typically rarely leave my room when I’m away from home in a hotel. So I can usually stay on top of my crazy work schedule. Here, I haven’t had an all-nighter in a while, but I’m not getting rest in the middle of the day, much less enough sleep. With Amanda’s discharge, I don’t see an end in sight either. That’s when I will be wearing all the hats from nurse to chef to chauffeur, and everything in between. I will be on a 24/7 on-call status for all those roles, too.

I typically get home and get in bed right away unless I need to take care of something. I try to maximize my sleep time when I’m in the apartment. I’m usually up early; my alarm goes off just before 6 am. I snooze a few times, then get up, get ready, and go, no time for coffee or a minute to get my head on. I was in the shower when I got a text around 6:30. I figured it was Amanda, because I don’t talk to anybody that early usually. I grabbed my phone, worried, and dripping water everywhere. Plastics had come by, she said, and they were going to get her around 8 for the surgery. I figured that meant they’d get here 7:30ish. By the time I was ready and out the door before seven, they had already taken her back. She gave me the location to see her. Typically, she’d just have seen me after, but she seemed unusually anxious about this procedure to close the wound. It was odd with it being such a basic surgery; they were just adding some sutures and sewing it closed.

I made my way to the pre-op room and hung out with her a bit before they took her back. I had a delivery to a nearby Amazon locker that I went to grab after they took it back. Then, I grabbed a few things out of the car to bring to the room and waited there to hear from the surgeon. I wasn’t around long before the team gathered in the hall outside our room. I joined them, and it was all good news without much new. The coordinator had the best news of all: the rehab hospital had a dialysis bed, and we were set to be discharged tomorrow, Wednesday! While I was in rounds, my phone was ringing, and I didn’t think much about it. Ringing again for a second call, I went to answer it, figuring it was the nurse with a we’ve started the procedure since she hadn’t called me yet. It was the doctor; they were done, and the procedure went well. He was optimistic that it was fixed. He had closed most of it last time, but added another layer of sutures then using stitches that would come out later for the final closure. Knowing we had a bed, I shared the news with him and asked if he was okay with being discharged the next day. He was fine with that and said he’d see us in the clinic next week for a follow-up.

After the rounds were over and I had both the team and the plastic surgeon’s approval for discharge, the rehab hospital’s dialysis bed was available. I was elated and sent out a happy praise text to everyone praying for us; it was about time for a good report. Happy tears flowed from me, and a few others, too, I imagine. I had some music playing, and after I sat down and composed myself, the song Another One came on. The lyrics just get right with it out of the box:

Those lyrics, that song, spoke to me in that moment; I couldn’t help but shed a tear. We’ve had miracle after miracle in this hospitalization already, and we’re getting ready for another one. ‘Cause another one is on the way,’ that’s what I’m believing, that’s what I’m holding on to, that’s what gets me through these times. We’ve seen Him do it, and we’ll see Him do it again. Though the line “fan the flame, keep it burning,” well, we could stop fanning a little, we’re refined pretty well after these past few months! Hard Fought Hallelujah followed Another One, so I was pumped after that duo. 

After the good news, when walking the halls, I was telling everyone I knew: “Hey, we’re getting out of here tomorrow!” I was met with fist bumps and the like, most genuinely happy for us. I saw a food delivery guy on a completely different unit. He has always been super nice, and we’ve had him on and off from the beginning, back in May. I told him the good news, and he had a big smile and a fist bump for me. We’ve made so many connections in our time here. The regular housekeeper is so sweet, too. She calls us her favorites and her best patients in a long time. When I told her we were getting out, she was so sad because she would be off when we were discharged. She’d told me a while back that she was so ready to see Amanda ring that bell, so she asked me to send her the video of it. Amanda was in surgery when she was cleaning the room. Before leaving, she wrote a sweet note on a Post-it and left it for Amanda. Later on, the nurse said she had another patient leaving for another unit and was being discharged because she’d built relationships with some of her patients.

The cardio and NP came back after Amanda was on the floor to do their assessment. Upon checking her wound site, there was no JP drain, a small suction bulb, as the surgeon had mentioned he might place. She wouldn’t need to go back on the heparin drip, so she was free of any IV or drain lines! They put her under general anesthesia, which surprised me. I thought they might just numb it up and close, but the surgeon said it would be pretty painful. Amanda was out like a light after she got back, head hung to the right side, favoring the side the lines had been in. They always try to prop her head up, but somehow she always slides off a pillow with her head dropped low on her shoulder, right over her clavicle. It looks so uncomfortable, but that’s just how she gets. It hurts my neck to even look at her like that! I tried my best to get pillows to work to keep it propped up. It took a few tries, but I finally found a setup that kept her head up better. Even when awake, she leans to the right, so I have to correct her and say Hey, you’re leaning and she pops her head back up, not realizing it. 

We were playing the Xbox when the nurse came in the day before. She knew the game and mentioned another one that was similar to it, also from the same company, for us to try. She played, and her husband was a Halo fanatic, saying in disapproval that he had a couple of Halo tattoos. While she was in, we talked as Amanda slept. We were talking about games. I told her how Amanda’s bestie, Britt, lived with us a bit, and the three of us love playing Mario Kart. I mentioned playing the original; the nurse said, ‘What do you mean, original?’ I told her on the old Super Nintendo or 64, I couldn’t remember the console. Then she said Oh, I keep forgetting y’all aren’t in your twenties. No ma’am, we’re not! Then I went on an old man ‘back in my day’ story of playing the original first-person shooter games on PC before they were even on console games. I felt ancient with her looking in wonder how I could even be that old, I didn’t dare tell her I played Oregon Trail! I’ve been brought into the fold of the early twenties crowd with Brett and his friends and the Hop crowd. They’ve graciously taken my old butt in. When speaking of Amanda and me, I typically get asked how long we’ve been married. When I say 23 years, I can see the calculation of “They’re old enough to be my parents” go through their heads! I guess I don’t give off the I could be friends with your parents” vibe. Many questioned how young we were when we got married, most not thinking I’d be in my forties!

Nephrology came by; an NP from that team has the uncanny ability to arrive when Amanda is in the bathroom over the last few days. No different this time, but Amanda was standing at the sink door open, so she came in to talk. They pulled 3.4 liters in dialysis on Monday, the most yet. To put that in perspective, that is nearly a gallon and about 7.5 pounds, taken off in 3 hours. Amanda hadn’t been feeling good all day, and was nauseous in the morning. The symptoms were masked by sleeping during and right after dialysis and the sedation from surgery. But later on, she said she felt heavy. I tried linking it to the feeling of when she’d lose too much fluid too quickly when taking the diuretics. Amanda told the nurse about the feeling as it got worse later in the day. I thought the heart team NP would come by, but I think we got lost in the NP shift change.

The later in the evening it got, the more anxious Amanda got about how she was feeling. I think it was in part due to the discharge. This isn’t my first rodeo. She gets like this with long hospitalization discharges or around the time I am gearing up to go back to work. I’m not good around this; I’m not patient enough to deal with the anxiety in someone else. I’m just so blunt with it and like just don’t be worried, it’s going to be ok! I know that’s not the way to handle it, but I just get frustrated with it. Amanda was uncomfortable, and the seat cushion she had had for months wasn’t comfortable enough now. She was anxious, and nothing was going to be right. We’d been here before, and I knew there was nothing she nor I could do. I pretty much told her I’ll do whatever you want, but nothing is going to work for you right now, so just try this!

She wasn’t feeling much up for dinner, so she just ate some soup that was leftover from Panera I’d gotten her for lunch. She’s never going to want broccoli cheddar soup ever again after this hospitalization! I’d only had veggie sushi rolls for lunch, so I was getting hungry and told her I’d need to go get something for dinner sooner or later. I told her I was just going to get something and come back. She was worried I was leaving early to get something. I ended up stealing some saltines and peanut butter from the patient drink/snack room and decided to just grab something on the way to the apartment. She is having a hard time with me being gone much at all. When I go to get her ready for bed, she always wants to wait or delay in some way. Not sure if she is purposely or subconsciously doing it, but it’s an everyday thing, no matter what time I mention getting her in bed, whether early or late. It’s tiring and frustrating. 

Last night, after leaving late, I had limited choices of what to eat, as things close early here in Nashville. Choices are limited after eight and even more so after nine, leaving fewer options in the latter time frame. I had a couple of choices in mind; I had to nix the first, then the second, one because I couldn’t make it by their 9:30 closing time. I settled on a pseudo Long John Silvers called Captain something or other. It was as you’d expect, not too good. There is a secret sect of people who keep these types of places open; I never see them busy! They had fried clams and hushpuppies, so I was good to go. I took my greasy spoon food to the apartment to eat. I didn’t even turn the TV on, just sat down, ate, and got to bed. I wasn’t asleep until after eleven and up before 6 with a text from Amanda that they were getting her for dialysis at eight and she’d like to eat before she left. I left and was at the hospital by seven, but they already got her an hour early for dialysis, typical! 

We’re still waiting for the official ‘you’re going to the rehab facility’ word, but I already took a load to the car last night in preparation to get out of here. Bev is on standby to come to see Amanda ring out and help me move things to the rehab hospital. It’s so good we have a friend here to help with things like this. Although I’ve made a few solid relationships outside of the hospital since we’ve been here, and have some more I could call on to help, like that. Not counting the church family, I see us having here in the near future, if I keep attending. I’m pretty sure I could make a call to the greeter I swapped numbers with, and she’d have someone here in no time flat! I know that’s how it would work in our church. None would have the charisma, spunk, or literal cheering ability of Bev, though. I’m pretty sure she’s going to end up with a pom pom from one of the nurses! This will probably be the last you’ll hear from me for a few days, with the discharge to the rehab hospital. From what the wife of the other heart transplant recipient told me, I know the first couple of days are really busy.