Amanda has been taking steroids since we’ve been here. Initially, a high IV dose, then a lower maintenance pill dose. I hadn’t noticed any of the symptoms we’d experienced before, except a little more of an appetite, until yesterday. Late last night, while watching a movie, she got unusually emotional. Today wasn’t a good day to be overly emotional, too; she was already worried about the Solaris. She was notably irritable this morning, as well.
I was up early, 5:30 or 6, when I heard they had a room for us in the ICU and would be transferring us soon. I was already packed, but I got up and organized everything. Then, two hours later, we actually got transferred. They had a smaller cart than we’d previously had but made it all fit. Then, we made our way to the CVICU (cardiovascular ICU), which is right next to the CTICU. We’d been there sometime in the past, and we both recognized the bathrooms, of all things!
They had her all hooked up, and Amanda needed to go the bathroom. There wasn’t a nearby prison toilet here, so she had to get unhooked. I told her I would just pop off the remote and help her, but she insisted the nurse do it the first time. The nurse seemed confused about what to disconnect; I don’t think they have many ambulatory patients in there. I didn’t bother calling her to hook it back up; I just did that myself and ran a BP. When we did call right after that for pain meds, it did take them a while to get to us. Not as long as the the floor but not as speedy as the CTICU either.
They finally started the Solaris a little after lunch. Amanda didn’t want to eat to keep from getting nauseous. Not that she would eat it anyway, but I ate the vegan burger and broccoli off her tray. It wasn’t that bad, spiced up with some leftover Chic-fil-A buffalo sauce. The infusion only ran 30 minutes; I thought it would have been longer to see if she could tolerate it.
While it was running, she slept; she looked tired. She was also jerking while sleeping, which was odd. After it was done, the IV machine started beeping, as it always does. I looked at Amanda to push the button to call the nurse. She’s such a good patient and didn’t want to bother them. I told her I didn’t want to push anything on the $25,000 medicine! I finally silenced it after I got annoyed.
Amanda felt nauseous and her feet were tingly after the infusion. She had them get her ginger ale and crackers. When that didn’t work, she had them get her nausea medicine. That did the trick, but the foot thing worsened for a while. An hour later, the ICU doctor came by and said something about moving us back to the floor. I quickly popped off, saying they mentioned we’d be staying overnight, at least.
The cardio team also came back to check on us after the infusion. We talked long enough for him to sit down but not long enough for us to ask the what damage we were doing to the heart long-term question. I wanted to ask him that to get the professor’s answer. We didn’t mention the Monday infusion request vs Friday; they approved that. He mentioned an infusion center, and I said we’d rather do it at the hospital. We are now scheduled for a direct admit the following three Monday after the upcoming one. He said we could stay the night or not up to us. At least that is all taken care of now. The tentative plan is to go through the weekend, discharge maybe on Monday.
Amanda finally felt like a little something, so I went to get her some Chic-fil-A waffle fries and a Coke to help with her headache. I made the long trek to the Children’s hospital and ordered via the only option, a kiosk. No ketchup or staw, and I had to get a bottled Coke out of the cooler. I couldn’t pay with the app that I had money loaded on, either. The ketchup and straw were at the checkout, not the regular tubs, and a bendy straw. It’s not a big deal, just weird, and he didn’t say, “My pleasure.” I was telling Amanda about the dismal Chick-fil-A experience, and she said, “Worst Chick-fil-A ever!” At least the waffle fries were fresh and good.
They told us we were returning to the floor just as we finished our fries! They must have needed the bed. I just don’t understand why we had to move all our stuff if that was the plan. We really got the shaft on moving back up, too. We got a small room with a crap bed and nowhere for me to sleep. The bed immediately started hurting Amanda’s back. She was miserable and in tears, hurting and emotionally wrecked, plus steroid emotions.
I told the nurse how she felt and asked if we could get our old room. No luck on that; it was already filled. I asked for another bed, but nothing. Then, a very unhappy Barkley made his way to the charge nurse. I already have RBF, so it’s not hard to know when I’m mad! I was easy on him, but I made it known what I wanted. He showed up with the same type of bed, but that wouldn’t help anything since it wasn’t the air style. So they ended up ordering a waffle air topper.
I ordered dinner, Amanda wanted pho, and I got some pad thai. Not long after eating, Amanda got nauseous. She started vomiting, which was horrible for her. When she starts throwing up, that’s it for her. I pushed the button, and 30 minutes later, the nurse showed up. Then, there was only nausea medication scheduled every 12 hours, so we had to wait for the doctor to approve.
I had to beg for another chair to put my feet on since my feet hung so far off the recliner. That was not a good combination when I just had my foot worked on and needed to keep it up. I went to steal a chair out of a waiting room, but they were all attached to each other. Finally, our nurse found a crappy chair that is a couple of inches lower than the recliner, but something is better than nothing. I have a plan to try and make something work. So we’ll see. I still need to soak my throbbing foot, too. It’s just been a rough day all around.
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