The Last Hurdle

Part of the long holiday weekend was full of reminders. It was bittersweet seeing old Facebook and photo album memories. We spent the last couple of years in Pagosa Springs in early September. It just so happened over the Labor Day holiday. Both trips were great, and it was becoming a thing for us to go this time of year. The second trip, last year, was with friends; we had a great time, and before it was over, we had plans to do it again. Britt had texted me a pic of Amanda and me on a hike from that trip, speaking of how it felt so much longer than a year ago. That was, we now know, weeks after the rejection started, and it has really felt like many years since then. This year will be one for the books. These last few months have seemed like years in their own right. I long to get back to our traveling, escaping these hospital walls. I have been outside and managed to get out a few times, but poor Amanda has only been outside these walls a handful of times since we arrived in May. The past year has felt long to her, too, but this hospitalization after the surgery has been a blur for her as she’s been in and out of it, only remembering blips of it.

We were talking the other day, and she said that she missed all of the summer, poof, and it was gone, she said. All of it spent inside these hospital walls. Our summers are usually poof and it’s gone, but because they are so busy and filled with ministry events. From kids camp, youth camp, VBS, and everything in between. This year, from one surgery to another, from one touch-and-go point to another, from one dialysis session to another, from one hospital room to another, from one tear-soaked tissue and plea to God to another. I won’t long for memories from this summer, but I should. God’s will bring us out of this, and we will need this reminder later on to recount how he brought us out of this dark valley. I know we’ll make it out this time. I don’t speak out of overconfidence or arrogance, but experience. We’ve seen Him do it for us before, and we’ll see him do it again. The top of the mountain wouldn’t feel so good if you hopped from one top to another; the valley makes you appreciate the mountain top. Either way, I long for the sweet, figurative and literal, mountain top feeling after this.

Besides the trip reminders of the past couple of years, I had a few from other hospital trips. A hospitalization from 15 years ago, another from 6 years ago, and one from 5 years ago. The latter was when we left for the transplant workup; we’d return a month after that, and not return home for nearly 5 months. In the mix of hospital and travel memories was a ministry trip I organized, where a few of us men from church loaded up to go to Houston to help with cleanup and mud-out after Hurricane Harvey. That was an exhausting trip of the 3 of us cleaning out and gutting moldy sheet rock off the walls of a home where a lady was rescued from her porch roof via a boat. We gutted the house in the day, passed out cases of water, prayed, and witnessed in the evening. Sleeping on leaky air mattresses in a kids’ Sunday school room. It was an exhausting but gratifying, fast-paced trip that I’ll never forget. So add this year’s pics of wounds, new friend selfies, and wound vac canisters contents to the Labor Day memories!

Monday, when I arrived at the room, the cardio and NP were there. I was confused; it was the same cardiologist as the week prior. It should have been the new one since it was Monday, but with the holiday, they rolled over an extra day. If I’d have known that, I’d have slept in since we had a Brackettville friend coming to stay with Amanda. I got her up and walked soon after I showed up, and the cardio NP duo left. She was nauseous and didn’t feel much like eating the breakfast I’d brought.

I stayed and chatted for a bit. With someone else around, I had a few things I wanted to take care of, so I headed out. The wound surgery was planned for Tuesday, but was pushed to have a specific plastic surgeon for the procedure. So I lined up my fill-in for Tuesday as well. Which worked out because what I did not think of was the holiday; everything I wanted to do, I couldn’t, since things were closed. Sadly, even a couple of donut shops I’d wanted to stop by were closed, too! I settled on a sausage biscuit and took it back to the apartment to eat. I put on some comfy clothes, put on a Star Wars show, got under a blanket, and crashed; that ended up being better than running errands. I had not even planned on going back if Amanda wasn’t up for dinner, secretly hoping she didn’t want anything so I could stay at the apartment. She was a little hungry, so I grabbed some Chick-fil-A on the way in. She only ate two bites, we went for a walk, I put her to bed, and returned to the apartment to tuck myself in early.

With the new team coming, I needed to be available for rounds, so no sleeping in, even with a backup coming in a second day in a row. I grabbed a taco on the way in. I usually leave before 7 am, as traffic is better then, and when I arrive, some of the shift change nurses have left, allowing me to grab a parking spot where I like. As with Houston, I have a favorite area to park in. It’s lower down and has me driving less in the garage, which keeps my murderous parking garage tenancy low. One wrong turn is worth it to avoid the feeling that I need to ram a 1 MPH driver off the end of the garage! The taco spot doesn’t open till seven. When I put an online order in, it won’t be ready till 15 after, so I slow rolled to get my never-ready early order up that I knew would be ready at precisely 7:15. This has been Amanda’s favorite breakfast so far: fresh-made tortilla, egg, hashbrowns, and refried beans. I’m starting to rack up points with the Austin and Nashville-only taco spot. After eating and a walk, Amanda asked to play on the Xbox. I think she is liking the challenge and the brain PT it is providing. 

I left soon after my relief showed up; I had the errands to catch up on. I stopped by Hop for lunch and to chat with Brett on the way out. I’ll miss popping in to chat with him during the slow times after he starts his new job; he mentioned the same. We’d talked about going to the range one day, and I thought it might work out after he got off. He doesn’t have a gun, but in typical Texas fashion, I came with a few including both mine and Amanda’s carry pistols. My relief was leaving earlier than I’d anticipated, and Amanda wanted to be back soon after she left, so we pushed the range date to another day. After lunch, I went to get my beard trimmed; it needed a little clean-up. With my long beard, after a month or so, I need help with my neckline, which is near impossible for me to see and shave correctly. I wore my biblical beard shirt so the barber would know what he was working with! He does a great job and does the best straight razor shave I’ve ever had. He talks not stop like a stylist though! He remembered why I was in Nashville and asked how Amanda was as soon as I sat down. Afterward I grabbed some ammo for an eventual range date, and before I left, Amanda was texting when I’d be back. She’s been having some tummy troubles, and she wanted to get her to the bathroom. There are plenty who can help her, but she prefers me, of course. It is much easier the way we do it and less painful for her. The shorter nurses and care partners have a hard time standing her up just right so that she can get her legs under herself. She made sure I gave the care partners each day, I left a rundown on how to get her up right! This is one of those times, like at work, where you make yourself invaluable at a specific thing, and you now can’t get away from doing it; good thing I love her so much! 

We ordered ramen for dinner, thinking that it would be easy on Amanda’s tummy. She ate ok, but not enough. The NP on Monday told her not to push herself to eat. I feel that was bad advice. She really needs to get some nutrition down. It’s different when she’s recovering from surgery, not wanting to eat. But as with other things, this is a marathon, not our usual surgical sprint. She needs the nutrition now; we don’t have a lot of meals to spare. She is a little below her baseline weight before transplant, but with the added fluid and steroid weight, I’d say she’s 10-15 pounds under where she was pre-transplant or more. After the first transplant, we saw nearly a 50-pound weight gain, so no telling where she really is. She has little chicken legs now, and if it weren’t for the upper extremity swelling, her arms would be pretty scrawny, too. 

As I was headed into the hospital this morning, Amanda texted that they were coming to get her for dialysis. We’d fought them off on Monday. She is supposed to be on third shift, which is late afternoon, so that she can do PT. I told Amanda to tell the nurse to have them push it again so we could get a walk-in. I knew if they didn’t, she wouldn’t even get out of bed today. We are opposites, so Amanda is the lover, not the fighter! I knew she wasn’t going to put up a fight. I was ready for one when I arrived, though. The nurse was in the room when I arrived, after I walked in, I popped off. “Well, did we get the dialysis stuff figured out?” She said how they wanted to get her back and right to surgery afterwards. The ‘they’ was questionable. Who was they? I thought. I was pretty sure it wasn’t surgery. With a 9:30 surgery and dialysis not starting close to 8, it was going to overlap. Though I wish I could, I can’t argue with the dialysis lab, and the nurse wasn’t going to advocate for us as the previous nurse had.

I wanted to get Amanda up for a walk, but she was sure they were fixing to show up to get her. I wasn’t that confident in their promptness and figured they could just wait on our walk anyway. Amanda wasn’t that brazen. I didn’t want to push her. We ended up having plenty of time for a walk before the transport showed up, but missed the chance. Except this was transport for surgery and not dialysis. As I assumed, dialysis was just trying to be bossy. When our nurse walked in to get Amanda ready to leave, I spouted off, “I guess dialysis didn’t know what they were talking about?” She didn’t realize they were there to get her for the surgery and quickly went to call dialysis. I was even quicker to tell her dialysis doesn’t get her now, we aren’t going to have this procedure pushed because of them! After she got off the phone with dialysis, she said they rescheduled it for afterwards. I held all the smug comments that came to my mind and kept them to myself. My patience for these kinds of things is as thin as hospital toilet paper right now!

Amanda is back in surgery as I type. This will be a longer-than-anticipated surgery, 4-5 hours, the surgeon said. I’m assuming, due to the exploratory nature, they don’t know precisely what is leaking or where it is coming from. Though plastics is brought in to do a muscle flap only, the fellow explained they are highly experienced in the lymphatic system and would be there to assist if cardiothoracic surgery needed their help. I’m praying hard they will find the leak, and if not, whatever they do will fix things, and that this really is the last hurdle we face. We don’t need a long-term wound vac during recovery, nor want to go back in and readdress this later on. We need to be done. I love Vanderbilt; it’s one of the better hospitals we’ve been in, but I’m beginning to loathe this place and want to be free of it. One thing we all agree on, from the transplant team, to the nurses, to PT and OT, and myself included, is that Amanda needs the intensity of the rehab hospital and will excel there.