A low-key afternoon

The PLEX treatment today was only albumin, so it didn’t wipe her out as badly as the plasma. She still didn’t feel great afterward. The cold feeling still hit her; I told the tech and asked him to turn the machine temperature up early. Amanda didn’t feel like eating, but I had leftovers from dinner to eat. I wouldn’t have allowed Amanda to eat them anyway; they had been sitting out on the windowsill since the night before, and we can’t chance anything with her being extra immune compromised. I made a couple of steak/roll sandwiches with the leftover sauces, had some mashed potatoes and creamed corn, too, and a couple spoonfuls of mac and cheese left!

Amanda started hurting later on, and I noticed quickly. The nurse was in the room, and I asked when the IV pain med was up because her face said she needed it. It wasn’t up for another hour before she could have it, so she took the oral but still needed the IV medicine when it was available.

The nurse we’d had the past two days was on duty as charge nurse today, so we had someone else. He stopped by to check on us in the morning. Then again, when Amanda was feeling bad, he noticed the monitor and popped in to say he’d been thinking of us today. He was nice and my favorite nurse we’ve had so far.

As I was eating lunch, Amanda asked if we had cheesecake left! We’d already decided we would celebrate with a double cheesecake nightcap once we were discharged! Then Amanda said what if the ablation worked, and she had a sustained rate below 100 then get some, and I concurred.

The IVIG was started soon after and ran for about 6 hours. It started low and was increased every 30 minutes for a couple of hours, then ran at a higher rate for 4 hours. They wanted to ensure she wouldn’t have an allergic reaction or any adverse effects from the infusion before it was increased.

Amanda was hungry for dinner, but I was still full from my leftover lunch. So, it was her pick for dinner. I didn’t think she could decide without help! She finally chose pho, and I got a side of vegetables. The pho didn’t settle with her well after the treatment. I now have leftovers for lunch tomorrow; I’ll just have to find a microwave somewhere. Later on, she did have a request: gummy bears! I searched a few vending machines and found some Hairdo bears and Sour Patch Kids. Amanda has been on a Grey’s Anatomy kick today, so we settled in and watched many episodes.

The ablation is scheduled for tomorrow afternoon. Hopefully, they can pinpoint the arrhythmia and ablate it. I’m apprehensive about it, but trust the doctors and know it is the best option. We haven’t seen any improvement in the rate since we’ve been here. The rate has only gotten worse as time goes on. The plus side is that if they do get it under control, maybe we can avoid the more aggressive treatment.

I did get called to work today. As I mentioned before, I’m on a reserve-type board with guaranteed pay. I only get called to work when everyone else in my area is off, and no one is available. My last sick day is now gone. As long as I don’t get called in and take off again before the first of the year, I won’t lose any money. But if I do, I’ll lose half a month’s pay. It has been good not to worry about work, but now I am. If I were on any other board, I would have gone home to work a trip and then come back, but I don’t have that option. I could line someone to be up here, then go home just to sit around and not go to work or still get called at the drop of a hat while here, like today. It is a two-edged sword. If I make it to the first of January without a call from the railroad, it will work great; if not, it’ll cost me, literally. 

I’m working on the website. I reached out to my website guru, but he’s on vacation till after the first of the year. I’ll be adding all of the older CaringBridge posts to our site to archive them. They started in September 2017 through our first heartiversary trip in October 2021. I am transferring all the old posts to the journal. I have to deselect the option to send the email update and change the date. So, if you get a post email that seems odd or out of place, I missed that button!