Improvement

The morning report was good. Amanda’s pain was under control with the pump, but she had to push it to get the medication; quick acting, but not long-lasting. The new ICU attending, sadly replacing Dr. Mery, was quick to want to add oral pain meds along with the pump. She ordered one medication, then I told her of the home regimen, and she made some changes and said my info was very helpful. I was spouting off medications and dosages like I was a regular on rounds when she asked me! I think we are in a good place and will be an even better place with the oral meds.

The pneumothorax looked better on the morning X-ray. The chest tube is still draining fluid. I’m not sure how long it will stay in, but as long as it has significant drainage, they’ll keep it in; the surgeon on rounds will make that call. Amanda really wants to drink; she asked for a refresher this morning. The speech therapist has to come by and do a swallow test before she can drink anything or eat anything. They want to make sure that nothing will go in her lungs. It would cause issues and only make things worse with the pneumonia.

Amanda actually said she wants to get up and walk, which was surprising. I guess her pain meds are working pretty well. Jackie, the nurse from yesterday, mentioned we could get her to the edge of the bed and let her sit. She ended up not being with us again today, and today’s nurse said we’d have to let PT get her up even to sit. The best news of the day was that the biopsy results came back, and there was no rejection.

Nathan and Kim showed up just about when rounds ended. I swapped out with them, and they went back till the pain team came by. The doctor was grilling Amanda, Kim said, so they came out to get me since Amanda is talking but not carrying on full conversations. So they figured I’d better go answer questions. I talked a bit. They were happy with the pain pump and nothing else. I raised concerns about when she does PT, I knew we’d need something for breakthrough pain. He said they’d put something in, and the ICU doc had already put something oral.

I ran out for breakfast with Nathan and Kim before they left to head home. Kim had seen something on bonuts, a biscuit donut. I knew the place, Amanda and I had been there before we came for her to surrender herself. So, we went there. I knew the front door wasn’t handicap accessible, and we’d need to go in the exit because Amanda and I had the same problem. Poor Nathan inspected the tires on his truck and realized he had better put a new set on it before they headed home. They had plenty of miles left, but he doesn’t drive it that much, and they were a little dry-rotted. They drove me back to the hospital and then took off to get the tires, pick up the trailer, and hit the road, trying to make it somewhere in Texas by tonight. To be honest, I was sad as I closed the door from hugging Kim and walked back to the CVICU. When I got back to the room, to my surprise, PT had come by and gotten Amanda in the chair, so that perked me up. I was a little skeptical that they would come by on the weekend.

Yesterday, I noticed Amanda was a little anxious. She has not wanted me to leave or be gone long. Today, she keeps wondering where I am. She felt a bit ashamed when the nurses cleaned her. These are all signs of ICU delirium. I’m really praying we aren’t heading down that road. It’s hard hard to be around that. She is also needing something constantly, I’ve already gotten up to adjust a pillow or blanket, get her ice, or get the suction. Every time I get comfortable, go to take a nap, or get my Mac out, she needs me for something. I’m going to need a break today.

Nausea has been a battle for a couple of days. I’ve been thinking it’s the feeding tube. That I can remember, maybe once before she’s had an NG tube. Today, I’m not sure if it’s just because she’s more alert, but when they push anything down the tube, it makes her nauseous. She has even gotten sick to her stomach with some fast IV pushes of medicine. It’s so weird, but she can taste some of the IV meds when they are pushed.

I was waiting for the cardiologist to come by, I had a very specific question. I wanted to know about both cellular and antibody mediated rejection. Were we clear of both? I had already text out to my prayer warriors we were clear, but later I thought on it and wasn’t sure. He confirmed no rejection of either. That was when I finally breathed a sigh of relief. 

The speech therapist came by later, and I told her Amanda had been waiting all day for her. It wasn’t what we wanted to hear, though. She was just there to give her ice and see how she did. Well, we had been giving ice to Amanda since the extubation. They could have just asked me how she was doing! The actual swallow study is only done during the week. So Amanda would have to wait till Monday to get cleared, and the refresher would have to wait. It was understandable, they take extra precautions with multiple intubations and transplant patients, since the risk of infection is higher.

After the pain service came by, they doubled the pain pump, so Amanda was pretty groggy. I asked her if she felt better in the morning before they upped it. She agreed, so I spoke to the NP about it. Amanda also voiced how she wanted to get days and nights straight. She wanted something to help her sleep. I was worried it would be a battle, but the NP quickly said yes. 

I needed a break in a good way; I just didn’t want to feed ice chips, adjust covers, or pillows. I love my wife, but I was tired today, and I felt like I didn’t have 5 minutes go by without having to tend to her in one way or another; she was a little bossy for my liking! She is still a little anxious, but not nearly as bad as a few days ago. She worried that the same night nurse was coming back; she didn’t like her, but she said she was mean and rough with her. I listened during shift change, and I knew she wasn’t returning. When I got ready to leave, she didn’t want me to. I was going to Hopoddy to see if Brett or someone else was working, whom I knew to talk to.

The nurse had said she wanted to get her back in bed, so Amanda wanted me to wait and go while they swapped out the CRRT lines, which would take about an hour. I’m not sure why, then, but that was her request. By the time I could go, I changed my mind and tried a new place here, Torchy’s. It’s a staple Texas spot for us; they started out of a food truck on Congress Ave in Austin. White boy Mexican food, but still good with a decent salsa. All you worried mamas, be happy, I ate twice today, that’s big for me! It’s a little further walk in the opposite direction, not much, but I felt it. Going back was uphill, and it was hot and humid! 

When I returned to the hospital, I noticed two things: Amanda’s face was puffy, more so than what I had noticed during the day, and she was mad I was gone too long! I wasn’t worried about the length of my break, but I was concerned about the very puffy face and neck. I told the nurse, and she said she noticed too. I also asked about the sleep meds, but none were ordered. The NP came in not too long after I chatted with the nurse. I quickly mentioned the puffy face and neck. She thought it might be air from the lung issues. Upon exam, the NP said it was, in fact, air, and I felt better than if it were fluid with the CRRT machine pulling 200ml per hour. 

Amanda has been increasingly anxious, it feels like the delirium. Trying to stay awake because she wanted to sleep, she hadn’t been using the pain pump as much. She has also said she felt weird, like unbalanced, and having a hard time with reality. Thinking it was medication, she mentioned it to the NP, but she isn’t on anything new. She just got some real pain meds and a sleeping pill. I’m praying she is knocked out for the night and will feel more balanced in the morning. I really hope it’s not the ICU delirium, that is hard on us both, it’s really hard to sit and watch. 

I feel revived a bit seeing friends, even if I didn’t get to see them much. I look forward to next weekend when David and Renee bring the rest of our stuff. Then the following weekend, Amanda’s brother and wife are tentatively coming up. I’m also working a double whammy of Britt coming up to stay with Amanda in the hospital, and a good friend, Larry from South Dakota, coming in to stay with me at the same time. It was good to see our people this weekend. Amanda was glad to see Nathan and Kim and asked about them a few times since they left.