More Downs Than UPs Today

Last night, after I finished writing the last post and replied to a few texts, I sat and listened to the music. I was the only one paying any attention; only a few others were there, and they were sitting at the bar. I’d been staying busy, but it was nice just to sit, have a drink, and listen to the music. If I’d stayed in the waiting room, I’d just have been anxious waiting because it was hours before I got the call that I could come back in. It turned out to be open mic night, and it ended at 9, sadly, only a few songs after I had finished my post. A guy got up to sing a couple of songs he’d written. He was good; I enjoyed his music, which had a very Americana vibe. The girl who had been singing joined him for a couple of songs. They harmonized well together. I think Amanda would enjoy going once she’s out and feeling better; it was a chill vibe. 

They ended with a cover of the song “Home” by Edward Sharpe and the Magnetic Zeros. I’ve always loved that song; it’s a favorite of mine. Sang as a man/woman duet, it has a Johnny and June “Jackson” vibe. Some of the chorus goes “Oh, home, let me come home. Home is wherever I’m with you. Oh, home, let me come home. Home is wherever I’m with you.” I’ve always liked that line, as I move in with Amanda tonight, “Home” for us, right now, is room 5CV19 of Vanderbilt Hospital. I’d just prefer it to be the A-frame in South Dakota from our last heartiversary or the Pagosa home we stayed at in the snow, or any other place than here! Either way, home is wherever I’m with Amanda. They did the song justice, and when they ended it, it left me feeling sad that the music was over. When they finished singing, the guy came over and thanked me for listening. He mentioned that most people just sit at the bar; I guess he noticed I enjoyed it. They ended up sitting down with me, and we chatted for a while. 

The pair were both from Philadelphia but had just met in Nashville a couple of months ago and got together at the hotel’s open mic night. She was a PreK teacher, and he was a bartender at Hopdoddy, a burger place that originated in Austin, which we like, and I had planned to eat dinner at. Both were aspiring artists here, searching for the dream that many come to this town for. A fellow bartender was with them as well, a goofy fellow who seemed always to keep things alive. I hung out with the trio, chatting and played a round of darts, which I won, until I got the call that I could come back to Amanda’s room. It was a good distraction for me for a few hours until I could get back to Amanda’s side. I never got my burger from Hopdoddy, but since both the guys are tending bar today, maybe I’ll get a burger with a familiar face behind the bar.

It was late by the time I got the call to go back. They had found a clot in her lungs. I asked if they had removed it, but the nurse was unsure. Her new blood gas levels were better. They planned to leave her intubated and sedated until the morning. I stayed with Amanda a while and headed back to the hotel to get some decent sleep while Amanda was still out. I just drove back to the hotel and parked on the street. I figured that on a Monday, no one would be patrolling the 2-hour limit parking. I was right, and there were no issues with my overnight street parking. 

My first stop of the morning was at the cleaners, where a man I assume to be the owner asked how things were going. I had explained our situations a couple of trips ago, so he wanted to know. I gave him the good news and the bad news. He’s a strong Christian and came around the counter to give me a hug, saying it’s amazing how we’re family and will all be together one day. I think it’s amazing how God can put a man in my life from a dry cleaners to help reassure me of faith in Him, from a simple t-shirt I wore one day that helped to lift that man up. It is amazing how we are all one big family in Christ. No denominations, no division, just all who’ve put their faith and trust in Christ are brothers and sisters in the family of God, and will spend eternity together.

When I got to the room, I noticed Amanda was awake; she had opened her eyes when she heard my voice talking to the nurse. I was thinking they were going to keep her out longer, but they’d weaned her off the sedation a little. They were keeping her comfortable, so she was mostly out unless she was woken up or was in pain. Her blood gas levels improved overnight. She needs too much help from the vent to come off it today. They were worried about aspiration and had removed a significant amount from the bottom of her right lung. 

I was pissed that someone had stole my recliner while I was gone. I was left with the pullout chair. I’ve never sat on a pullout bed of any type that was comfortable. This piece of junk is low, and my knees are close to the level of the armrests. They had to rearrange all kinds of stuff to get it out, too. I don’t know why the nurse would have let them take it. I was obviously coming back! I was fuming mad about it and still am as I sit here with my legs falling asleep. My anger turned to worry as I sat down and watched Amanda. She was hurting, and they were trying to get it under control. When the alarms would go off, it’d bother her and wake her up; then she’d get squirmy and start to hurt. It’s so hard to understand what she needs, being intubated and not able to talk. It’s just a frustrating game of 20 questions until we get a head nod yes. I knew it was going to be a long day after only a short time in the room. Whoever stole my recliner better stir clear, I thought!

The PA rounded before the team and answered a few questions, but said I’d have time to ask more of the team once they rounded. The team consisted of 10-12 doctors and PAs from various disciplines, including the surgeon who performed Amanda’s surgery. They stood outside in the hall and talked about Amanda for 10 to 15 minutes. They covered more than any rounds I’ve ever been a part of. They were far more complex than anything I had seen in the many medical shows we watch. I thought I was pretty versed in things, but I was humbled; much of what they rattled off, I didn’t have a clue about.

She has a junctional rhythm where the beat originates from an abnormal node. Also, there was still a spot on her lungs from the X-ray, leading them to think of aspiration. There was so much to take in during rounds, I was a bit overwhelmed. But upon questioning a little on the lungs, it seemed that the clot migrated and blocked off flow and caused her lung to collapse, which brought on the issues yesterday. They spoke of doing a few things early as a preventative, but were worried about the risk with all the ‘mab’ drugs she’d had for help with the antibodies back in Texas. Typically, they do a biopsy at 14 days, but they’ll do hers in a few days. The plan was to leave her intubated until tomorrow and reassess. I went from being mad that someone stole my recliner to being pretty concerned as I sat with Amanda, too, feeling a little better after standing in on rounds.

Too much noise was waking Amanda up, and she started to hurt, slapping her legs. She couldn’t do much else since her arms were tied and she couldn’t speak, being intubated. It was hard to watch, as I couldn’t do anything. She seemed more anxious when I stood by because we couldn’t communicate, so I tried to only go to their side if she opened her eyes and seemed like she needed something. There was a tube going into her belly via her mouth that had a foul green color liquid coming out, I’d never noticed that before from previous surgeries. She began choking and spitting up the bile, and the nurse was able to suction it out, but it was scary. I’d never seen that before while she was intubated. I was thinking I was holding it together pretty well; I hadn’t cried this go round yet until all of this happend. It hit me hard when I was texting a friend about things. They did finally got some extra pain meds and something for nausea; those helped to calm her a bit. She received a round of antibiotics to help with anything that may have gone awry from the aspiration. They were waiting for cultures to come back from the lung gunk to see if they needed to treat for anything specific.

Her oxygen level dropped significantly at one point. Amanda almost sat up when it happened, or maybe it was pain, and the sitting up caused the drop, but it stayed low, and she was in pain, so I called the nurse. She called RT in, but we were thinking it was a pain issue, and she got some oral pain meds that they crushed and mixed with distilled water to put down her feeding tube. The oral was twice what she was getting before, but the IV was the same as before the transplant, the smallest dose. They’d said the nurse could call for more, but it just went cutting it. They seemed to be giving her the standard dodge. I wasn’t sure they even looked at her history. I asked to speak with the PA about the pain regimen to sort things out. 

A doctor came in to tell me about a line they had put in in addition to the many she already had. This would be a larger neckline; they needed to do a few rounds of PLEX over the next few days. I had to leave while they placed the line and went to the cafeteria. As I arrived, I received a call from a Nashville number. It was a kidney doctor calling to get consent for the PLEX. I questioned whether it was a precaution or if they were concerned about antibody mediated rejection (AMR), the rejection that got us here. He said it was a concern about the AMR. It was a little disheartening to hear that news; we may have to battle antibodies again. I gave my consent over the phone and grabbed some sushi. I went to the waiting room, ate my sushi, and received a call not long after that, saying I could come back.

Of course, the PA came by while I was gone. The nurse texted her that I had returned, and she swung by. They had already changed the medication to a full dose of the pain med and swapped out the oral medication to the same, more potent drug. She asked about the medication, and I told her I was satisfied but had questions about the PLEX. She said the cardiologist was considering possible AMR due to her irregular rhythms. Since she’s been junctional, beating from an unusual area, and there was no harm in preemptively treating her, they want to err on the side of caution. 

I guess I sparked something questioning about the PLEX because the nurse got a call from the cardiologist asking if I was staying. She wanted to come by and review her thoughts behind the PLEX. She showed up in the early evening, a very petite, a good bit shorter than Amanda, and polite lady. She explained things very well. They were worried about some things with the crossmatch. Initially, they did a virtual match, and the results were all negative. Once they performed the cell-based crossmatch, this is where they take a piece of the donor’s heart and mix it with Amanda’s blood, or possibly some tissue, which I’m not sure, and see if there is a reaction. This is to see if there is any possible rejection early on. The results showed that one antibody from the donor heart had a slight issue, and some of the other results were inconclusive and unusual to the entire team. Also, on physical examination, they heard what she referred to as a significant ‘rub’. This is where the pericardium, the sac around he heart, has friction with the heart itself and can be heard with a stethoscope. It’s caused by inflammation in the pericardium. All of these factors, on their own, aren’t much of a concern, but together they have led them to suspect AMR. This will only be confirmed by a biopsy. They will perform the biopsy earlier than the 14-day mark but later than planned, while rounding, because the PLEX can cause issues with bleeding. I questioned the use of the ‘mab’ drugs used in Texas, whether good or bad. She seemed neutral but was concerned about infection from their use, so they were going to proceed with caution. I had a few other questions, and she seemed to be impressed with my line of questioning. I didn’t mention that I felt out of my berth during rounds!

The PLEX team is here now, starting everything. It’s a lengthy process, taking approximately four hours. I was on top of them about premeds. Amanda has an allergic reaction to most blood products, including the ‘mabs’, so she is premedicated with Benadryl to help. One of the nurses who was helping mentioned to the other that after she left, she was going to visit another patient she’d had last week. She had a bible and a tract that she wanted to give to her because she woke in the middle of the night with that patient heavy on her heart, she said. She was going to give her those and tell her that God loves her, back to us all being the family of God. Nurses like that probably don’t have a clue how much they are ministering to souls. They are cherished saints if you ask me.