Light at the End of the Tunnel

Saturday morning, I woke and was immediately thinking of the timing of things. When Amanda gets out of both the hospital and rehab facility, I’ll work on getting Tank up here, when and if she’ll need a kidney transplant on top of everything else, when I have to go to work, and how long we can last with the funds we have. There are so many variables, and neither of us would have ever dreamed we would still be in the hospital after transplant 3 months later, we’re already at ten weeks. I haven’t really thought of this much. We have been pretty busy with everything else on our plate. The addition of insurance costs has significantly increased our monthly expenditures, too. My mind was going in circles, I needed a plan.

I’m not necessarily anxious about it. God got us through the last transplant, and I know he’ll see us through this one, well. I find comfort in a solid plan, though, and I didn’t have one for my return to work or how we’ll even go about it, with me leaving. I don’t even know what condition Amanda will be in when we get discharged from the rehab hospital. I’d planned on being off a month after surgery. That would normally be enough time for her to be pretty self-sufficient. This go-round is so much more complex, though. She is so deconditioned, and it will take a considerable amount of time to get her up and going. Also, when we get out, she has dialysis 3 days a week, as well as outpatient rehab 3 days a week. I’ve been keeping in touch with the wife of a transplant recipient from only a few days after Amanda, and had a rough go of things, too. They just got out of rehab, a little earlier than she was ready for it seemed like, after only two weeks.  That makes me wonder how ready Amanda will be when she gets out. She may need much more rehab after we’re out, which will be left in my lap, holding me here in Tennessee longer. There’s so much to consider.

I have a tentative plan to mark up from my leave of absence early at the end of October, so that I can take enough personal days to get my insurance paid for in November. Then go to work for most of November for the funds and insurance. Working just a few days in December to match the remainder of my personal days to get the required work days to keep my insurance through January. That feels like a good plan, but I have to be able to leave Amanda, and she’ll need someone here to help her. Then we have to worry about whether we are going to need kidneys. Ideally, if we did need, though, we could hold off till I’m back up here in December. When I spoke of the tentative plan, Amanda was anxious about me leaving at all, too. Sooner or later, it’s going to have to happen one way or another. 

When I walked in the room Saturday morning, I noticed Amanda had a barf bag sitting between her legs. The nausea still plagues her off and on. Thankfully, she never needed it. Nausea is her kryptonite; if she throws up, she’s down for the count and can’t even think of eating for nearly a half day. Thankfully, the nausea medication she had taken before I got there started working, and she was able to eat the Chick-fil-A bowl I’d brought her.

On the way in, I was listening to my regular devotion and scripture. This devotion was titled When the Waters Rise. It began by saying that courage has many faces and voices. It doesn’t always look like having it all together. It doesn’t always sound like bold declarations of unwavering faith. Sometimes, courage cries out: “O God, I’m not okay. I’m drowning. I’m in pain. I’m barely holding on.”

That opening brought me to tears; I felt that deep in my soul. I knew those words, I’d cried those words. If you’ve been with us reading these posts through the CVICU days, I’m sure you felt that. Even with the recent frustration with our continued complications. I have complete confidence God will see us through this and use all of this for His and our good; we’ve seen him do it before. That doesn’t mean I haven’t cried out those very words from the devotion: “O God, I’m not okay. I’m drowning. I’m in pain. I’m barely holding on.” 

The devotion was in Psalm 69. David doesn’t mask what he is feeling, nor does he sugarcoat. He reminds us that having faith doesn’t necessarily mean we won’t feel overwhelmed by our trials. As the devotion said, it grants us permission to cry out, to say, “I can’t carry this alone.” The Psalm doesn’t end that way in a dark place; there’s a shift. In verse 29, it says, “But as for me, afflicted and in pain— may your salvation, God, protect me.” David’s storm hadn’t passed yet; he clung to the knowledge that God would come through. He was courageous, not in a fearless or loud way, but faithfully clinging to God. This Psalm struck a chord with me because that is precisely where I feel we are. We’re in the midst of the storm at a breaking point, with an end that seems so far away, barely hanging on. But with everything in me recounting what God has seen us through in the past, I cling to that faith in Him, who I know will use this for good.

With the nausea holding things up in the morning, we got off to a walk later than I wanted to. Plus, right as we were getting ready for a walk, they showed up to do an echo. We did make the longest walk yet. I’d gotten Amanda a neat sweater with a cute heart on it for her discharge prize once we get to that point. I saw it in a window in the way back from Hop on Friday and didn’t think twice about going in to get it. I’d told her she had to wait to see her prize till discharge, but I added an incentive of a walking goal. I’d first thought if she made a lap around he nurses’ station that would be a good goal, but I extended it to a full lap of the floor. She’s excelling, and I’m confident she’ll make that goal. I’m pushing her hard, but she’s doing great. I’ve been adding things like making her walk to her robe and putting it on herself, pulling the curtain back, and opening the heavy glass door to the room on her own, unassisted. It’s tough for her, but she needs an upper body workout, too; she is so weak. Even though she may not praise me, quite the opposite actually, when I’m pushing her hard, the lead PT always gives me the thumbs up when he sees me with her out in the halls!

Sunday is my typical sleep-in day as of late. I did sleep in a little early on Saturday, too. I knew this doc would likely get to the room before seven, and I just wasn’t going to get up that early for non-productive rounds. I didn’t sleep in too much this Sunday since I was heading to church. I was up and ready early to go to Sunday School before service. I was a little too early, with the church being close by, so I sat in the car for a few minutes like a wierdo, I didn’t want to be too early my first time! I felt pretty comfortable quickly. I was greeted by a little old lady, who was happy to see a new and younger face. I told her I was looking for a men’s class or a co-ed class close to my age. She was calculating the right class for me, saying Well, this one is a bunch of old people, not this one, and so on. She picked two she thought would fit and said Well, you can peek in both and decide. 

I knew what I would be in for with this church, being a smaller church. When I pulled into the parking lot, I saw nothing but grey heads, which made me feel at home. Amanda and I, for years, were always the youngest adults at church. There were a few years that we were the youngest in our small group by 50 years! So the age difference didn’t bother me. The co-ed Sunday School class I ended up in had a few my age, but most were retired. I enjoyed it and felt comfortable enough to participate. Of course, after sharing my story, which the greeter made sure everyone knew of, I garnered attention. I was added to the class email list and promptly placed on the prayer list, too. 

This church is multifaceted, with a Laotian service running alongside the regular service. The leader of the class I was in attended that service. There was also a new church that rented space from the church and had a service that overlapped. When I was in the auditorium, the greeter made a beeline for me. She was telling me a few things about the church, saying that we’d get more attention here than at one of the bigger churches! That was part of the reason I chose this smaller location; I wanted to make relationships, not just attend church. The thing with the family of God is that there’s always a family close by for you. Service was good, a little old school for what I’m used to, but the worship and message were good. The pastor is interim and was one of the worship leaders, though he didn’t lead and only preached. As you’d expect with Nashville, the worship was great. The leader played keys and then also had a drum stick, whacking the snare drum as needed, as she led. I can barely clap on time, so I was impressed! 

The message was good, and the pastor broke it into two parts for time’s sake. I’d have preferred a longer message and heard him bring it all home. The younger pastor was probably scared of the crowd, who wanted to get out for the ball game or lunch; I’m sure. I thought the crowd was a little stale. When I was telling Amanda of the worship and the crowd, she said one she’d be singing to and not with. From where I sat, that’s what I thought, as well. If YJ had been preaching he’d have given out a few, “Are you with me,” as he’ll do when the crowd is quiet or he’s preaching on something hard. Though quiet, I felt comfortable and loved by them. I was greeted by a few after service who had already heard our story; news travels fast in a smaller church. I didn’t stay long after, as a business meeting followed shortly after the service. By the time I left, I felt comfortable with the congregation, with plans to return.  

After service, I knew where I was going for lunch, the soul food place not far from the apartment, the one with butter beans that reminded me of my mother. They opened at noon, and with the church service starting at 10:45 and only an hour on the dot, I had plenty of time to arrive right at opening. Except they weren’t open, the door was locked. I went back to the car and heard someone holler at me. They called me back and were open. I had to wait for someone to come from next door to fix my plate. Connected next door was a small church. I recognized that the name of the pastor and the soul food kitchen were the same. I also recognized the lady that I was waiting for as one on a banner for the church. She had come straight from the next-door church service, which is why they weren’t open yet, and also explained the odd noon opening time. She wore a very bright, colorful dress, with jewelry stacked upon jewelry around her neck and wrists. We chatted a good bit as she fixed Amanda’s plate of smothered chicken and some sides for me. 

In the afternoon, Bev showed up to visit for a bit. She is either a cheerleader, literal with leg kicks and a cheer for Amanda, or she is busting my chops for something! As I was having Amanda put her robe on and open the door by herself, she called me a drill sergeant! She likes to play both sides, smiling at me as Amanda opened the door. Amanda is getting stronger each day. On our walk, she made a pretty big lap. Bev wanted to take a picture of us walking, but Amanda didn’t want any taken. I still got some pictures sent to me later that she sneakily took! I’ll share here, but if you post them anywhere else, I won’t have to kill you because Amanda will when she’s better, right after she kills me for sharing them here!

I left late and got to bed late Sunday. It’s like every time I sleep in or show up later than usual, I end up staying late that day. I was dragging pretty good when I got up on Monday, a case of the Mondays for sure! Amanda texted me early, saying the plastics NP came by to say they wouldn’t be doing anything until at least Tuesday, so she could eat. I stopped by and grabbed some breakfast for her on the way. Breakfast is my favorite meal; it kills me to get breakfast and not eat any!

Rounds were generic, nothing new, but a different cardio. This is the one who did our evaluation on our first trip; Amanda and I both like it her. She’s the one who is an advanced heart failure cardiologist for two weeks and is a musician the other two weeks of the month, very Nashville of her! I made sure to let them know about the need to get out of her and to make sure all the t’s were crossed and i’s dotted. I don’t want any holdups in getting us out of her. When the team showed up, Amanda was about ready for a walk, already up and standing. She ended up standing while the team rounded in the hall. She impressed them by standing when the cardio did her assessment. As soon as they got out of the way, we took off on a walk. 

We didn’t make it far before the plastic surgeon made a beeline for us. This was the Antiguian. I like him; he was very personable and friendly. I would peg him to be a ladies’ man if he wanted to be! He is one of only two doctors who’ve shaken my hand. I respect that. He talked with us for a while and said that since there was no drainage, he would close the wound on Wednesday or Thursday, depending on her anticoagulation medication. The NP happened to be eavesdropping and said she was already on heparin, which meant she only needed to be off the drip 6 hours prior. I didn’t even have to plead with him to do the surgery earlier. After he heard the news, he said, “You know what I’m going to do for you (a very Caribbean English accent in the fo youu), I’ll do this tomorrow.” I wanted to hug him. After our walk, the coordinator, a very sweet lady, dropped by and said she had the insurance approval for the rehab hospital and was requesting a Wednesday transfer, pending a dialysis bed. I sure hope we can get out of here by then. The light at the end of the tunnel is finally getting closer. 

We both want some Vandy Med Center merch, but the gift shop is pretty sparse. Amanda had noticed a shirt she liked that a care partner was wearing, and it had a children’s hospital logo on the sleeve. So for our lunch outing, I wheeled her all the way to the children’s hospital gift shop. It’s a good way away. It was a beautiful Tennessee day, so I took her down the outside courtyard to get there. We didn’t have any luck with shirts, but the food court there has a Taco Bell, so we grabbed some lunch and took it back to the main hospital courtyard to eat outside. Amanda wanted to be in the shade, but by the time she was done eating, she wanted to sit with her back to the sun. We had a guest for lunch, too, a squirrel who had found a slice of bread to munch on! 

Dialysis ran late today; they didn’t come to get her till close to five. I had pushed her to eat before last time, but she didn’t want to then, but agreed it was best to do so today. I was happy because with an after-9 return to the room time, I really didn’t want to return myself that late. After they took her, I needed to drop some pants off at the cleaners and pick up a shirt. I was close to Hop, so I walked across the street to see who was working and if I wanted to chat with them. It was my second favorite bartender, and Jackson was expoing, so I stayed and talked for a while with them. I was in a mood and just didn’t want to go to an empty apartment. I needed to go rest, but I really didn’t want to go. So I stayed and talked. I eventually left and grabbed some dinner and also picked up some emotional support donuts to keep me company. 

I’m not sure what time the surgery is on Tuesday, but I’m certainly praying this is it. We could use a break and a change of scenery. It’s time we get to the real hard work. I’m hoping I can catch a break when Amanda is in rehab, too. I really need some time to get a few things in order in the apartment and just get some rest. I think it would be a good time to send cards, now to lift Amanda’s spirits. The rehab hospital isn’t going to be fun, and they will work her hard. If you’d like to send a card, you can send it to the apartment: 370 Oakley Dr, Apt 704, Nashville, TN 37211.