Tank must have needed to go this morning because he wouldn’t leave me alone while I got ready, peering at me through the cracked bathroom door. He is doing much better now. The many prayers and poops have helped for sure! The ring camera was set up, so I watched him as I left. He didn’t even stay at the door long, nor did I hear a whine, and he was on the bed by the time I got to the elevator. He was back and forth on and off the bed after that, not using the steps I got him! That must have made him sore because, after that, he settled on his landing pad, not the bed.
I went to order coffee and noticed a 20-minute wait. So I called Amanda to see if she wanted me to wait to come back later. She thought they’d start the Soliris soon and said I better get it now. I chatted with Dennis while waiting. The nurse we talked with about StarBs yesterday thought I was crazy since I knew his name. He’s there daily, talking with and opening the door for everyone; how could you not know him? He pulled a double yesterday, so I saw it when I got lunch and an afternoon refresher.
When I walked into Amanda’s room, there was a pile of bloody paper towels and tissue. She had a bad, bloody nose that had started over the weekend and seemed to have worsened. I double-checked that she had asked for an ENT consult, and she had. The hospitalist, one we’d seen before, came in afterward, noticed the bloody pile, and agreed to the ENT consult Amanda requested yesterday.
The transplant team came by with the PA we like in tow, but an NP still seems to call the shots right after the cardiologist. They went over things in the hall. I overheard the NP say to the cardiologist that Amanda was getting the Soliris today, and he questioned why not yesterday. Yeah, us too, buddy! I prepped Amanda before they came in, telling her she needed to ensure they knew how much fluid she was retaining. She gets mad when she mentions something, and they don’t do anything about it. She is so meek many, especially ones in a hurry like this cardio, always seem to dismiss her. We are the exact opposites. I’m very assertive and sometimes overbearing, but I get my point across well! Amanda told them about it, but I had to hop in and be assertive, telling them how many pounds she was retaining. She’s about 25 pounds heavier than when we came here in December and 10 pounds heavier than last week’s admission! I feel we may need a heavy-duty diuretic if her kidneys can take it.
We also talked to them about the admission process. The ER admission isn’t working or safe. Amanda was using a bathroom that all the other ER patients were using. By lunchtime, after the large, sick crowd showed up, the bathroom was nasty. She said someone had thrown up in there; it was cleaned but not well, the trash was overflowing, and pee was on the floor. It doesn’t take an MD to know that’s not a safe place for an immunocompromised patient. The PA acted like they might be able to change things around. I ensured they knew we were staying right here and could just wait in the hotel room. I also made sure they knew we’d waited in other waiting areas for the room, and they would call us when our room was ready. I may have mentioned this multiple times, assertive, remember!
Yesterday, on the Texas Heart Institute Facebook page, I noticed they showcased their new state-of-the-art cath lab equipment. Touting it as the best cath lab in the world not just because of the equipment but for the innovation that will come from the lab. Not sure how much they were tooting their own horn, but we wouldn’t be here if they weren’t at the top of their game. We traveled for years back and forth to the Cleveland Clinic in Ohio for the best care available. Though this facility isn’t what the Cleveland Clinic is, they are still in the running for best cardiology programs. As for the facilities, they just don’t have the room to breathe like the Clinic or Mayo. In Cleveland, they were all alone and had a 38-acre campus with 38,000 employees when we went there, much larger now well over a decade later. Mayo was started in a cornfield in the sparsely populated Midwest, so they had plenty of room to grow. Anything in the Texas Medical Center is limited on space in the heart of the fourth largest city in the US.
A coordinator, not ours but the one we like, came in. She must have gotten word of our distaste for the admission process. She sounded like she knew what we’d asked. Amanda was getting premeds for the Soliris. The steroids made her feel bad and become moody. As I’ve said before, roid rage is real! So, she was quiet, but I made sure the coordinator knew what we’d told the team and my plan for waiting in the hotel room.
They ran the Soliris over an hour versus 30 minutes this time to help with the side effects. It seemed to help with the shaking and her BP. She shook less, and her BP was in the 50s over 80s still but at the high end this time not the low. I wanted her to eat before, but with the nosebleed, she wasn’t hungry. A nosebleed bad enough to have a bloody taste in your mouth and causing her rate to go up wouldn’t make me hungry either.
The nurse was supposed to check vitals every 15 minutes but didn’t stay in the room like the last nurse. She walked by about 10 minutes in and asked how she was. I just told her she was sleeping, and she said she’d be back in five minutes. She showed up about 3/4 of the way through the infusion, but only after I pushed the button for Amanda to get nausea medication. If she’d left the BP machine hooked up like the last nurse, I would have been running checks myself. The three vital checks she was supposed to get turned in to one.
The nurse talked with us while giving the meds and thought we were brother and sister! She asked if we got that much; as a matter of fact, no, we have never gotten that. She also inquired if we had kids and pressed when we said we didn’t have any. Did she not look at her history, or do some people just not care about the subject? In case you didn’t know, don’t ask a couple in their 40s who have been together for over 20 years why they don’t have kids. Either they didn’t want kids and don’t want to explain it. Or, more than likely, they can’t have them for what could be a myriad of reasons, and they definitely don’t want to explain that to someone who obviously thinks they should have kids. This has been a recurring conversation we’ve had many times. You’d think that in the hospital with a health history longer than I am tall and minimal deductive reasoning skills, most could figure the no kid thing out!
This nurse is batting zero. She also likes to close our door, which makes it cold and makes us feel like we’re in prison. I gave her a few chances and then resorted to my gait belt door lock. This works well unless a big, burly guy comes in and tries to shut it. Then, they might rip the sharps container off the wall!
The charge nurse took over for a bit this morning while we swapped nurses. He returned and checked on us after the infusion, which I appreciated. He seemed to think things went better after they adjusted the infusion length, which I agree with; it was much better. The steroids helped, too. It’s looking like we might get discharged today. I’ve already extended the hotel room another day; there’s no way we’re driving home after the infusion.
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