I was tired when the alarm went off this morning. About an hour before my alarm went off, Amanda had texted me what room she was in. It took all night, nearly 12 hours, to get a room on the floor. It’s good that she got a bed because that would have been a long wait in the waiting room. She might need to tell them of her chest pain every time we go in; that’s actually what one of the transplant doctors told us to do. I texted Amanda to see if she wanted coffee when I came over or later. She never responded; I called, but she didn’t answer. So, I went with the safe route and showed up with coffee! Our Raise a Hallelujah merch was in, so I was sporting my new pullover on this cold day.
Amanda had been asleep when I called, about the only sleep she’d gotten all night, she mentioned. The hospitalist came by and spent a good bit of time with us. I guess she had more time allotted since we were new patients on the floor! There was some confusion if Amanda needed to go back to the ICU. We assured her that the team was fine with the floor. We had a room next to our previous large corner room; it was like they were taunting us.
The hospital was dead. With the holiday and weather, no one was around. The Soliris was being put together in the pharmacy but hadn’t arrived yet. I had a follow-up with the podiatrist, so I asked Amanda if I should skip it. She said there was no need since she was just going to be hooked up to the drip and not going anywhere anyway.
As I went to get the car, I was hoping my parking spot right next to the edge would pay dividends with the GMC app starting. No luck; it was cold leather for a while! About the time my butt thawed out, I hit the lineup for the MLK parade. Good thing for navigation, taking me around the crazy one-way downtown streets. My follow-up was good until the podiatrist dug around my toe so much that streams of blood were flowing! He made me hang around to see if I’d bleed through the bandage. While waiting, Siri even taunted me about the trip we were missing. I guess she didn’t get the update I canceled our Airbnb on a ranch in New Mexico.
The transplant team came by while I was gone. The cardiologist we liked the least, the one who says keep it up, and our favorite NP we hadn’t seen yet were rounding. The NP seemed to call the shots Amanda mentioned. She wanted to get the fluid off and thought it would be best to keep Amanda another night for more diuretics. I was considering staying an extra night on Tuesday because of the weather coming in. I think that made the decision for us. We’d never get out of here at a decent time tomorrow anyway.
I returned just as Amanda was starting the Soliris. The nurse asked her how she felt; she said, “Just ick!” I couldn’t talk her into eating anything, but she ended up eating the cheerios I had saved from her breakfast tray before she started the infusion. We’d already told the internal medicine doc in the ER she would need nausea medication after the treatment. She wasn’t as shaky as before, but her blood pressure did drop low, around 80/50. The nurse stayed in the room for almost the entire infusion. She was worried about the low BP and stopped the infusion. She had three calls to different doctors about her low BP. The Soliris had to be started back anyway because it had a two-hour shelf life after it was mixed and had set for almost an hour to reach room temperature. Amanda wasn’t as bad this time; she wasn’t as shaky as the previous time. She felt bad, but it didn’t seem as rough as last time. There was no fetal position this time, but she did have a lying version of The Thinker statue. I’d post a picture, though cute, I don’t want to deal with the repercussions!
As the nurse was in the room, we chitchatted about things. She said the hospital told all the nurses coming on duty to pack a bag for three days. They didn’t want anyone unable to get to work and would put everyone up through the storm. It was early, around shift change, when I went to get dinner. Everyone had bags, large bags, and rolling suitcases. One had a wheeled wagon, and I heard another ask someone leaving if they were making another trip; it looked like most were packed for a week or more!
When we started eating dinner, Amanda was getting cramps in her hands. Bad, curl her hands up kind of cramps. We called for a nurse, and no one showed up for about 30 minutes. By the time they arrived, they got a little better, and the nurse left and never returned. Her pain got up during shift change, and it was almost an hour before the night nurse and trainee got to the room. She arrived to introduce herself, not because the light was on. I think they are oblivious to the call lights. It took her a while to get the morphine, then she pushed too much air into the vial and blew all the pain meds out. So we waited again to get more. It was like amateur hour!
Once Amanda received the morphine, she was better relatively quickly. Yet her hands were still shaking, lingering effects from the Soliris. The cramps were coming and going. She was given penicillin that had potassium in it, which should have helped with the cramping. With all the side effects, it is a good thing we weren’t discharged today. I think we’ll need to request an overnight stay after the Solaris from now on.
I stayed until about 10, then headed to the hotel. I wanted a good night’s sleep, and Amanda needed to go to bed early, too. The doctor didn’t put her sleeping medication in, and it wasn’t worth the fight, so she just took her home meds. Once she was all set, with strict instructions from me to take her sleeping meds early, I took off.
I met a fluffy new friend in the hotel lobby. A very fluffy and happy English sheepdog, she was so excited. She was pawing both paws simultaneously at me and even woofed a little! I could tell she was friendly and happy. I think the owner thought I might be scared, but I just wanted to pet the puppy. I had to send Amanda a picture of us riding in the elevator together. Not a service dog, as the harness stated, with her insane happiness unless that was her attitude off-duty!
