Slowly Improving

After I got back from dinner, Amanda woke up a bit and wanted some ice chips. She was up enough for me to tell her all about my new friends and how our Nashville support system is growing, and I had someone to decorate the apartment! I crashed after ice chip feeding. I didn’t sleep through the chair theft this time. A nurse was helping and had a very loud and annoying voice. So I was up early around 5. I’d left my hoodie in the Yukon when I left the night before when I hitched my ride, since it’s not hoodie weather outside. This morning, I went to get it because Amanda always likes it to feel like a polar ice caps cold; most nurses complain about it. Since I was at the car, I was like, well, I’ll go grab a coffee. Maybe I subconsciously left my hoodie just for that purpose!

The cardiologist, Dr. Tsai, came by for prerounds. I just looked her up, she’s much younger, or got her degree later than I assumed, she just finished her fellowship at Vandy last year. This is her last day with us; they swap out tomorrow. Amanda was looking better and more alert, and the doctor was happy to see that. I told her I’d get Amandas hair to try and look as good as she did, as it was looking a mess after she’d slept. The cardiologist has been great, my favorite so far. She was so sweet explaining the biopsy to Amanda. Rubbing her arm, saying how she knew Amanda had had a rough time. I will miss her on rounds. 

The NP came by for her pre-rounds. She thought Amanda was dry, but I didn’t think so. With both Amanda and I losing significant weight after going whole food plant based, she can hide it in her abdominal area well. She was still going to hold the pain meds again today because of how sleepy Amanda was yesterday. We spoke yesterday about me getting her something to drink, but I misunderstood that ‘sips and chips’ included full-on drinking; otherwise, I’d have ordered a refresher from Bev when she came. She asked about eating to get the feeding tube out or at least turned off. I told her that she wasn’t going to eat, and if she just took her off NPO, I’d handle it and let her know when she’s eating enough to turn it off. We’ve done this a lot; it’s a process, and she’s not ready yet. Refresher, yes; food, no; hospital food, most definitely not! We always start with pho to get the tummy awake and help with the sore throat from intubation. I pretty much just said I’d take care of things. I had a few questions for the surgeon and wondered if she knew. How did they close, since the wires had caused issues before, and did they reconstruct any of her SCV or leave the previous reconstruction? She didn’t have the answers, but would look at her chart and the op notes or ask the surgeon during rounds.

Rounds started with the NP directing my questions to the surgeon. Since Amanda was an infection case, he didn’t plate and used wires. I was a little concerned, praying his tying technique is better, or something is different, and she doesn’t have any issues again. He “didn’t touch” the SVC reconstruction. With the slowing output and rising creatine and BUN, they wanted to start Continuous Renal Replacement Therapy (CRT), a type of dialysis that runs for 24 hours. Praying her kidneys pick up and can do the job on their own. Come on, girls, perk up, quit being temperamental! The rest of the tubes were to be pulled. Still holding pain meds because of drowsiness. I also asked about the sternal nerve block. I think it helped last time, but she was reintubated the next day and has been out since. They pulled up the echo and found that Amanda was holding on to a good bit of fluid. Last minute, as they were walking off, I heard Dr. Tsai say to her fellow that she wanted to start a statin. This is a cholesterol medication, but it has other helpful effects. They help prevent cardiac allograft vasculopathy (CAV) and improve survival in studies. The thing is, Amanda had an allergic reaction to the most with a severe tingling sensation in her hands and lips. I chased them down to let her know about it and told her which one Amanda had been on that didn’t have those effects. 

This is why it’s so crucial for me to be here during this time. I’m really praying I don’t have issues with work letting me be off. They had said I’d need to find other means of being off. I’m currently off on my two-week leave, and I’d like to keep it this way. I have enough compensated days to be off the next two weeks on and qualify for insurance, and not work at all. Then, in the next two-week on, I may be able to go home some, and still take more compensated days to shorten it. If not the two-on-two off, then at least extend my leave by 30 days, and I’ll just pay the insurance premium for COBRA to keep it going. We could really use some prayers in this area. I need to write a letter explaining things, but I have been a little preoccupied. I haven’t wanted to stress about it; it had been bothering me when I received the news back home a couple of weeks ago. If money were no option, I’d just ask for an extended leave of absence, but I’m still not sure they’d let me off for that. 

They came in to do another echo, with a technician and not a doctor. I mentioned the issues with getting a correct CVP and the IVC issues the doc had. The tech was saying that the doctors don’t know all the tricks they need to do to capture the IVC correctly. She found it no problem. They are the ones who teach the doctors to do them, and she said some retain it and some don’t. I’m sure it has a lot to do with the experience in actually performing the echo.

After that, I had PT time. Amanda wasn’t looking forward to it either! They got her up to walk in the hall today. It takes more time to get ready, untangling lines, that’s it, to actually do the PT. She did well and walked about 20 feet down the hall, as well as getting out of the room. I walked behind with the chair at the ready. She wanted to sit and stop, but the PT pushed her hard. She pushed through the pain; she was in agony without pain meds on board. The PA had said she’d give her a round, but was busy and hadn’t put the order in. PT said she thought she did well and Amanda did all the work, muscle-wise; she just needs to work on endurance. Pain medication would help with that; maybe that will make a case for adding pain meds. When she was up in the room, Hard Fought Hallelujah was playing. 

She got back in bed since they were planning on starting the CRT, and they needed to pull the remaining chest tubes. The NP came in and we joked about how she called it yesterday about them wanting to pull the remainder today. It was surprising, excruciating for her, and the worst pain yet was the pulling of the tubs. Getting them out should help with the pain, but it was going to take a minute.

Nephrology, kidney doc, came by for a consult about the CRT. I mentioned that Amanda’s output had picked up. After checking her number in the chart, he said they’d hold off for now. I asked about the BUN, and he said they weren’t worried unless it was 200 or more. Amanda was 110 this morning. This is why I like a team approach. I’m glad they called for a consult. The nephrologist said it’s best if they can just let the kidneys do the work. Praying it stays that way.

Next to come in was the ICU doc, who’s also an anesthesiologist; the pain team wasn’t needed, he’d do the sternal nerve block. I like him; he’s quiet and very clinical, if you will, with not much bedside manner, but I get a sense of unspoken respect from him. I think I get that from many while standing in on rounds. I only feel disdain from a couple of them. The nurse assisted him, and another ICU doc eventually joined. The one performing the block is tall and had to raise Amanda way up in the air!

They had planned to get her back up in the afternoon to see how she was doing with the chest tubs out. I asked Amanda if she wanted a refresher before or after. She chose before, but very softly. She isn’t speaking much. Her breathing is labored, and I think it’s hard for her to speak. I took off and made the trek on foot, a little over a mile down and back. I was on the phone and forgot to order early. I sat outside waiting; the sun was shining, beaming down on me, and I could have taken a nap in the warm sun easily. It felt so good after being in the Arctic! Once I returned with it, she could only take a few sips at a time of the refresher. It hurt her throat a bit. Slowly but surely, she gets around to drinking a big one! 

She was having a hard time breathing and had low oxygen stats. She may have a pneumothorax, where air is trapped between the lungs and the chest wall, they think. Also, something on an X-ray showed a possible gas pocket in her stomach, which could be pushing on her diaphragm. They took another couple of X-rays to confirm. They all turned out clear. Then the nurse changed her O2 sensor out; it may have been that. She may be a little anxious, too, maybe coming off the pain meds cold turkey was a bad idea, now that the sedation is wearing off. I had a feeling we were going to land here. She just feels off and seems a little off to me. I think all the extra sedation really messed with her. Praying the biopsy tomorrow doesn’t set us back with those sedation meds.

Finally finding a sweet spot with the recliner where I was able to see Amandas face, her monitor, and not be in the way of the IV pumps. I was tired and it was close to shift change when laid the recliner back. I took my glasses off and put them on my lap. Next thing I know, I was napping, mouth wide open! I’ll be glad when our stuff arrives and I can get a decent night’s sleep every 4 nights or so. As it was shift change, I ducked out to get dinner. After Beverly brought food, it pushed the “hunggie” button. I had dinner at a dumpling house not too far away. I had some soup and veggie dumplings with a spicy peanut sauce.

As I came into the room, Amanda was lying flat while the nurse was wiping her down. I didn’t see the need to have her flat for so long. So I was instantly put off; she seemed a little bossy to me, too. Not having much compassion for Amanda, who was obviously in a lot of pain. The NP was in and mentioned the pain med was PRN, as needed, and she would give Amanda a spot dose of the muscle relaxer. We talked about a few things, then she left. When the nurse was done and had turned Amanda, I asked about pain meds. She only mentioned the muscle relaxer; the pain med wasn’t PRN after all. I was a little mad and told her how shift change happens, and no one seems to communicate from one thing to the next. I understand the balance in keeping her alert and not zonking her, but it’s nighttime, why can’t we let her be comfortable? 

I wasn’t much of a fan of the nurse, but then I turned around when she got the incentive spirometer and the weighted pillow and helped Amanda work on her breathing. The first time in seven days that a nurse had done so. Amanda needs that, she hates that thing, and doesn’t listen to me when I try to get her to use it. So, I was glad to see a nurse instructing. She was bossy enough to get Amanda to listen. The battle was with pain meds, I was perturbed, and she knew it, so she talked to the NP who was in a procedure. I just feel so bad, Amanda. This whole time, she has just been sitting with her eyes wide open, not talking, and staring at the wall in pain. I have never seen her like this. She is not unresponsive, but close. Not zonked either, just in pain with each breath. I really dislike it. It’s not the pain medication; she hasn’t had hardly any!

There was also an issue with the diet. The NP put her on a diet; she had gotten two trays already. The night nurse, while the nurse was in the room, had said NPO at midnight. I was giving Amanda sips of her refresher and told the nurse how many cups she’d had through the day so she could chart. I was being nice, I don’t have to keep track of that, but I do. The nurse didn’t say anything, then rolled back in her chair and said she was NPO. I said yes at midnight and gave Amanda another sip. I will die on a dump hill, I was prepared to die on this one, and I kept giving her the refresher. I feel the nurse knew she had met her match; she laid everything out and said she would get back with me. She came back and told us Amanda was only NPO after midnight, just as I’d told her; yes I’m gloating!