We had the same nurse today as yesterday. The first doctor in was the hospitalist. I asked again about the ENT consult. They told us they could easily see Amanda in the hospital, so I wanted to check again. They gave us the same line: We’ll see you in the clinic. That’s a little hard when we are inpatient, though. The nurse returned to draw blood because Amanda’s hemoglobin was low. They wanted to recheck it before giving her another blood transfusion.
A transplant NP came by next. Amanda’s kidneys were mad at all the diuresis, so they lowered the Bumex drip. She mentioned the same thing as the cardiologist last night about going to the ICU after the biopsy if the pressures were high. She mentioned they might give her a medication to make the heart pump harder, and then they could increase the Bumex. After everyone had come by, Amanda wanted to shower before the transplant team came by. The cath was scheduled for 3 in the afternoon.
Amanda’s heart friend from El Paso came by after some of her appointments and stayed for a while. Not long after she left, the cath lab nurse came to get Amanda about 4 hours early. I walked her to the cath lab and then returned to our room to pack in case we went to the ICU. We had leftovers from last night, but oddly, there wasn’t a microwave in our hotel room. So I stored them in the hotel fridge and brought them back with me to heat up. I nuked them after getting the room ready, then headed over to eat at the hotel and let Tank out. He wouldn’t eat his dinner last night; I think he is stressed out without his mom and alone in a new place most of the day. So, he was staring at me pretty hard while I ate lunch in his presence!
After taking Tank for a potty run, I headed back to the cath lab waiting. I wasn’t there very long before they came to get me. As usual, there was no visit from the doctor. They had Amanda all wrapped up in a little blanket cocoon; even her head was wrapped up. She always complains about how cold the cath lab is. Dr. Nair told her the pressures were high, but the output was good. I was expecting her to be in the ICU afterward, but she went back to the floor. I thought I would go home since Amanda was going to be in the ICU with better care and more attention. I could make a trip with work and be back Sunday. Then, I was thinking of dropping Tank off with someone halfway. There is no sense in him staying; the hotel room costing us when I can stay in the room with Amanda. I really thought this trip was going to be a couple days. I needed to make a decision, but without knowing much more, I wondered how long they’d keep her now and if I should go home or not. The team was on the floor. I’d hoped they would stop by, but they didn’t. So I was back and forth; all I knew was I wouldn’t keep the hotel another night. I was kicking myself for not getting an apartment a month ago; hindsight is 20/20. But that does make me think we could have allocated our resources better.
They came in to do an echo not long after Amanda returned; she didn’t get much of a break. She was tired and napping; I even napped during the echo with the blinds closed and lights off. I had worship music on, and after a while, a song came on, and the echo tech said her husband played drums for a church band and had a hard time getting that song down and played it over and over. I don’t think she was a fan of that song anymore. I got such a good nap that my mouth hung wide open when I woke a few times! As the tech left, the song Praise came on, and she said, “This is another one.” I guess her husband had an issue getting that one down, too!
I had to make an early evening run to let Tank out and feed him. He didn’t want to eat again. At least I finally got him to eat with a treat on top of his food. He hasn’t even been eating the treats but puts them on his food, and he’ll eat it. He’s a goober! I grabbed Amanda a refresher. Since we didn’t have morning coffee and thus no leftovers, I had to call the barista off of getting me my ice and cold foam; he was ready. Amanda sent me a picture of her feet, saying that the hospital socks she had on, even though they were big ones, were still too small, with her puffy feet and legs. They had cut into her legs and feet. I’d order pho for Amanda; she wanted to eat before the transfusion. I still had more leftovers from last night that I was toting back with me.
We talked a good bit about what to do, hand Tank off or me go home. I needed to decide. I didn’t want to spring a trip on someone at the last minute for that. We still didn’t know what the plan was. Then the cardiologist from last night came back by. Turns out he is with the transplant team. He is a dark East Indian man with a beard and sports ostrich cowboy boots as his daily footwear. He also went to medical school in Dominica. He confirmed what Dr. Nair said: high pressure with okay output. They want to wait till Saturday to see how well the Bumex gets the fluid off. Though her heart output is okay, it isn’t pumping efficiently because of the stiffness. The medicine the NP had mentioned wouldn’t work. If we hit a wall and the Bumex can’t get the job done, they would need to start another medication that would help her heart pump better to get the fluid off. He mentioned that Amanda needed to get the fluid off before she could go home. I’m glad he came by late to see us and lay the plan out.
I decided that Friday I’d go home, to get Tank back, and to make a trip with work. I’d called Brittany to see if she could come up, but she had other obligations and couldn’t make it. It’s pretty last minute for someone to come up from home, and I should be back by Sunday. Amanda is ok with me leaving and understands but is not necessarily happy about it. I need to get to work and preserve my vacation. I also need to ensure I work enough to maintain insurance! When to go back to work and to leave Amanda is never an easy decision. The last time I left Amanda in the hospital like this, we got the first word of the new heart on my drive back. I might have stayed if we hadn’t gotten the relisting news, but we have to think long-term now since we are talking about another transplant and all that is involved with that. We must conserve everything, from my vacation days to our funds, because this year will deplete them both quickly.
The second hemoglobin came back low, so Amanda needed a transfusion. It took a while for the nurse to return and get the type and cross for the blood. Then, it was a while before the blood was ready, around shift change, which pushed it on the night nurse who didn’t seem to be in a hurry to get it going. Amanda needs premeds for the transfusion, Benadryl, and Tylenol. In the interim, we had an IV machine that was incessantly beeping. The day nurse kept saying it needed to be charged, but that wasn’t it; the night nurse said the same. I made it clear to the night nurse that we needed a new machine; it was driving Amanda crazy.
The night nurse didn’t get the blood ready till late in the evening, around 10. Then, she didn’t have the premeds Amanda told them about. When she finally got the order, it wasn’t even IV Benadryl, just one oral. Amanda wasn’t happy about it and made sure the nurse knew she’d have to wait to start the transfusion to let the measly dose of Benadryl kick in. The oral wasn’t anywhere close to what the IV dose would have been. Amanda and I had both had enough of the night nurse. Maybe we’ve just had enough of the hospital!