Moving Up

Maybe it was the good night at the apartment then back to the hospital chair bed, or maybe it was the commotion Wednesday night, but I slept horribly. Amanda waited all evening for the CT scan to happen. They came to get her at 3 am while we were both asleep. I don’t remember much, so I slept through some, but as tired as I was this morning and throughout the day, I must have been more up than I thought. I thought of sleeping at the apartment every few days. As good as I felt after sleeping there the other night, I may close that gap significantly. I’ve already told Amanda that when she is in stepdown, I’m staying every night at the apartment.

Amanda’s blood pressure has been dropping and is “soft,” as they say. Normal is 120/80 since we transitioned to plant-based, and after the first transplant, she has been 90s/70s. Here it’s been 80s/50s, but they aren’t too concerned with those numbers, and go by the median/mean arterial pressure or ‘MAP’. The normal is 70-100; the orders have been to keep Amanda above 65. If she stays in the low 60s, they typically haven’t medicated too much. She’s been off the IV BP meds since early in the last rowing of CRRT and still hanging between 65-70, good for here, and occasionally in the high 70s. Yesterday she started being “soft” and has been since. This has worried them about the intermittent dialysis (HD) and whether she will tolerate it. Oddly enough, her BP liked the CRRT last time and didn’t do so any other time before. I have my apprehensions about whether the HD will cut it. She’s only made a little urine, and again today she has been NPO for the cath and biopsy, so things present differently since she hasn’t had anything but sips of water with meds. 

The CT came back, not showing anything significant. No bowel impaction to explain her nausea and stomach pain, both of which are better. The CT did show colonic lining thickening, possible colitis (inflammation of the large intestine) that may explain some of the symptoms. Still, the team seemed to think that was a common finding of an abnormal CT in many. I feel some of this may be a little anxiety with things. We are getting close to getting out of the CVICU, and so much as happened and set us back, so maybe the changes and getting better are actually making her anxious. 

The dialysis was done early Thursday morning and her BP held well throught the session. She did get to go outside to the atrium on the floor for a bit. It was the first time she’d been outside in a wheelchair. It was muggy, and she didn’t want to be in the sun to get hotter. I would have baked in the sun after not being outside for so long. She’s not much of a sunbathing outdoorsy girl, though. There was a man who was sitting on a bench when he came out. He asked the nurse if Amanda had a transplant. With HIPAA, the nurse wasn’t allowed to answer that and said I’ll let her answer that. Amanda said yes, and the man proceeded to tell us his wife had a transplant. I wasn’t so cordial, nor was Amanda; it was her first time outside in 30 days, and she really wasn’t feeling well. Neither of us felt much like small talk; it just wasn’t the time.

There was talk about the chest tube coming out, but the surgeon wasn’t around, so no decision was made. Some asked what I had thought, whether it was clamped while they did the CT. It wasn’t, and that’s when the problems happened. When it comes to chest tubes, it’s always a surgeon’s call; they put them in, and they call the shots when it comes out. Later in the day, I was asking the NP when she poked her head in. She wasn’t in a hurry to take it out, and neither was I. I’m sure Amanda is; she’s correlated all the recent problems with the other. The surgeon happened to walk by while we were chatting. He said the CT looked good, turned back around, and walked to the door. He had Amanda cough, looking intently at the chest tube collection box, had her pucker up, put her thumb in her mouth, seal her lips well, and blow. No air leaks were visible, so he said ‘Pull it!’

The NP went to get her supplies to pull it, but, of course, the cath lab team came to get Amanda for her biopsy. Then the commotion ensued over where they would gain access since they had a catheter in her right femoral artery. This happens every time, in the wee hours of the morning, in a half-awake, half-asleep state, I heard the cath lab PA saying they would go through the right side. I guess that didn’t trickle down to the nurses. This is when it’s imperative that I’m here to advocate. I told them how they usually change the dressing and just use the right neck access. Also, about the AV fistula she had and how they placed a stent in her left groin, so that’s not good access, and also how the right groin is being watched by wound care. All things no one knew about. I wrecked the cath lab nurse’s world and summoned a doctor to the room! They ended up using the side where her catheter was already and redressed it while she was lightly sedated. Much better than wide awake since she is so sensitive to the glue on bandages.

I had been waiting for word on my leave of absence, but I keep getting the run-around. I initially requested 30 days, but had pushed it to 60 since, with the way things have been going, I initially wrote a letter explaining things shortly after the transplant. It’s been unnecessary stress. I thought for the love of God, why is it so hard to let me off unpaid without benefits? It costs them nothing to let me be off. I like my job, but loathe the company I work for. I took the cath time to leave and go to Hopdoddy to take a break. I didn’t know the bartender well, but she asked how I was doing and called me by name as I sat at the bar. Cue the Cheers theme song. She told me that Brett raved for 20 minutes, telling her about the meal I cooked. She seemed a little jealous! I had some happy hour sliders for a late lunch, then headed back when the after 5 pm rush crowd showed up.

I showed up just a few minutes after Amanda arrived back from the cath lab. She was awake but in and out of it as usual. She mentioned something about them having dilated pupils to gain access. So I was a little concerned about the SCV reconstruction. Dr Nair was back in Texas, and I always stayed away from neck access because of that. The following day, I questioned the cardiologist, but she said they didn’t dilate anything; it seemed Amanda just assumed that because of the pressure they applied to gain access.

I had been planning to go to the apartment for the night, but Amanda was anxious about my leaving. So I just ran home to grab clean clothes and came back to stay the night again. I was a little frustrated because I needed a little better sleep and had been planning on going for the last couple of days. I think it’s anxiety with things changing quickly and the likelihood of us getting out of the CVICU soon. The feeling of everything getting better quickly and still not feeling that much better makes her hesitate, I’m sure. 

The cath and Friday morning’s echo looked good. The preliminary results show the rejection had decreased and was a 1R. That is one step away from showing no rejection at all, and some consider it to be a negative result. We’re still waiting for the antibody rejection level results and are hoping they come back negative. She did a regular dialysis session, and her BP held throughout. She was also still making urine after the dialysis session, so it looked good to get her out of the CVICU. We told the day nurse about how Amanda peed a little overnight. On this floor, everyone is giddy over pee and poos! He said Thank God for the small miracles. I needed that reminder.

I made an errand run to the cleaners to drop off some jeans, to grab breakfast, and cash in on the reminder StarBs starts before they expired Friday night. Amanda is eating a little. She mostly likes eggs for breakfast. I got her a breakfast plate with some grits, thinking she’d eat those too, but she didn’t eat much and mostly ate the scrambled eggs. It’s a very narrow lane of what she’ll eat right now. She still thinks any seasoning is spicy, and she can’t handle anything remotely dry. She couldn’t even eat the moist biscuit on her breakfast plate.

I need to see a dermatologist about some red marks on my lips. I’ve had them for a while, and they get worse when I don’t shave every day. Needless to say, I don’t shave every day right now, I just don’t care to. From my Google foo, it’s a type of dermatitis that can be worse with stress, so I’m sure that has been a contributing factor. I was going to book an appointment, and when I got on the United Healthcare site, it said my insurance had been terminated on July 31. Now I have to battle UP all over again about it. I know it will get reinstated, but it’s just added stress and frustration I really don’t want to deal with. Plus, the dermatologist appointment was a no, since they won’t take me with no insurance, I have to wait for it to be reinstated, which took two weeks for them to do last time.

Amanda went back for a swallow test, and I went to Hopdoddy for a bit. Beverly was leaving to drive in to see us as I left. I took a pair of jeans to the cleaners that I had forgotten before I went to Hop. Brett was working, so I hung out and chatted with him for a bit. I got to hear a demo of his song for his girlfriend that he recorded himself. As I sat down, I received a text from my manager. They approved my request for a leave of absence for 30 days with the option to extend as long as I let them know a week before the first one ends. There was a lady and her husband, who had Parkinson’s, and had just come from a Vanderbilt appointment. I sat a few seats down from them at the bar. She spoke to Brett of how they believed in the power of healing and prayer in Jesus’ name. I popped in with an “Amen.” Then Brett mentioned how I was here at Vanderbilt with Amanda. I chatted with the couple a bit. Then it led to me having a really good conversation with Brett about God. I can see him searching, and God is working on him. I just hope I’m a good influence on him. He did speak about how positive I’ve been with what we are going through. He also mentioned how he’s prayed for Amanda. I believe that has spurred him into praying more in general, and he’s seen God answering. He’s been encouraged, and I’ve noticed a change in him. 

With Bev on duty, I stayed and chatted a little longer than I would have without her there. She let me know when Amanda got back and gave me the lowdown on the swallow X-ray. While she was swallowing the barium pill, they had to watch as it went down; it got stuck about halfway down. It described exactly what Amanda had been feeling and having issues with. I grabbed Amanda a kid’s tender meal and headed back to the hospital. When I arrived at the room, they were about to pull the chest tube. The PA started to tug, and some of the tube came out, but then it got caught. After all the NPs on the floor were in the room, one found that there was an internal suture. The NP that had started to tug first should have released the line to make the suture uncurl. Instead, it pulled the coil at the end tighter. Then they tried the release, but it didn’t release. They were searching their phones to find the answer, but weren’t sure, so they called the surgeon to confirm that cutting it was the right move. He came by and concurred that they could cut it and gave specifics on clamping it. They followed his orders, cut the tube and cable, and then it finally came out. It was a long and painful ordeal for Amanda, but it was finally over.

They put orders in for the step-down unit transfer, but we were in a spot where we were waiting for a bed. So from our abundant experience, we knew that it would be some time. I’d planned to go home again, but Amanda said the nurses mentioned she may get transferred in the middle of the night. She really pushed that, mostly because she was anxious about me leaving again, so I stayed. I need to go home and get a good night’s sleep, though. I also need a good shower; there’s never a good shower in the hospital, or at least one big enough for me to fit in. Plus, I’m running on about day 4 or 5 of no hair washing. Not uncommon for me with long hair, but I haven’t been pushing it that far out with this round of long hair yet, let’s just say the dry shampoo is building up!

I guess it is the need for a break. Thinking I was going to go, but not going home at night has gotten me frustrated. I was a bit despondent this morning, well, more just grumpy, I guess! Also, we were waiting to be transferred, and that’s always a bummer. I was done with everything, the nurse, rounds, just ready to leave the floor. I didn’t even see any nurses I knew well enough to share the good news of us going to step down with in the halls. I just wasn’t having it today, good thing the nurse didn’t cross me, because I was locked and loaded today!

Late in the afternoon, the nurse said they had a room, but there was a patient still in it who needed to be transferred to the CVICU. So we were waiting for them, waiting for a room to be cleaned, waiting for their room to be cleaned. It was going to be a minute, in other words! After we got the word, we were just waiting for our new room to be cleaned. I ran some things to the car. I also needed to pick up some jeans from the cleaners. I hadn’t expected to stay this long without going home. On my walk back to the room, I got a call from a Vandy number. It was Amanda using the nurse’s phone, telling me they were about ready to transfer us. 

She hasn’t asked, and I haven’t given her phone back. I always joke that I don’t want her to drunk text anyone! Now, though, there is too much of a media barrage. As she said, she wants a level playing field. I don’t feel she is ready to be bombarded with all that just yet. Nor does she need to feel obligated to answer texts or calls. I needed something off her phone the other day, and she had a ton of social media messages, text messages, and over 1000 unread emails! I don’t want her worried about any of that. I know everyone means well, texting and messaging her, but dealing with her recovery is enough on her plate. I know this all too well and limit my calls, texts, and social media interactions; I have to for my sanity. There are only so many times you can tell the same story over and over before you just go mad. That’s why we learned to isolate when we would get home from big surgeries for a while.

The nurse and care partner had all of our stuff loaded on a cart and were getting Amanda ready to roll when I got back. I’d already packed our things and had them all piled up and ready to go. We took the most roundabout way to get to the step-down room, but we made it. When we arrived at the room, I noticed our dresser, flowers, and rolling cart were there waiting for us. The charge nurse was the mini Jesus girl who gave Amanda one in the step-down unit before, and came to see her in the CVICU, and brought another. We lost the CVICU one in the cath lab; it never returned. She was ready and had two more for Amanda, and had been holding on to one that was a little bigger just for her. The nurse we had was the one who sent us off for the transplant, too. She helped me put everything away in storage. I’m not sure who set everything up, but it was a welcome surprise. Amanda said she was trying not to cry. When I talked with the charge, she said the same thing.