I know, I know, yes, we’re still alive; sorry for the delay in posting! Staying at home both ways at work didn’t leave me much time to write. I wrote most of this on the train or in a van at work. This will get you caught up through Saturday morning, though.
Amanda’s weight was up three pounds Wednesday morning after the mab infusion. Half what she gained last time but still going in the wrong direction. Dr. Nair had mentioned she may need to come in three times a week for Bumex. I was thinking more like twice a day everyday of the week. When Amanda told him she was around twenty pounds over base weight, he seemed concerned and mentioned a possible readmission to get the fluid off. I questioned if we could come twice a day, saying it would be a pain, but if it keeps us out of the hospital, we could do it. Then Amanda asked about a PICC line and possibly doing the Bimex at home. That became the new plan to set home health up and do double IV Bumex daily to see if we can get the fluid off.
As we waited for Dr. Nair to come in, I had a call from someone I used to work with. He moved to San Antonio years ago and works on the same board to Houston as I do now. He’d heard of Amanda’s issues and wanted to check in. We caught up, and he offered to swap with me on the board. His turn was coming in, and it would give me an extra day off. With all we had going on and now the double IV Bumex appointments, I took advantage of it. I hoped it would line me up better to come home, too. I have a union meeting on Monday back home that I need to be at to get a few things signed by the trustees.
Dr Nair did ask about Methodist and Vanderbilt again. Amanda thought he was more interested in Vanderbilt, but I think she was reading too much into it. I can tell she is ready to go up there. I’m worried she’ll be antsy about going there once we get approved. We can’t swing going up there long-term without being reckless in liquidating things, and we aren’t there yet. The only way I’m on board with going there now is if it’s a hospital-to-hospital transfer with Dr Nair saying we have to go right now. We’ve already picked up and moved. We don’t need to don’t again. We can sustain here in Houston however long we need to. I like the plan of getting approved there and reassessing 6-8 months after we are listed with Methodist. Amanda is just sick of being sick, and I get that, but a lot of logistics come into play beyond just going and getting a heart somewhere else.
She did get some good news, which was the best of the clinic visit. She can stop taking the nasty Mepron. It’s a thick finger paint consistency yellow medicine to prevent pneumonia. She hates it and has to take 10ml of it every day. I also questioned Dr. Nair about the Vanderbilt visit. He seemed apprehensive about us flying but now says he thought it would be ok for us to fly. They have been calling to book the appointment, so I need to come up with dates for us to go. I feel early May is the best timing. I will try for a week’s leave of absence to keep from burning up my vacation. I need to save as much as possible for the rainy days ahead.
Tank has become a diva with the girls walking him. He doesn’t like walking in anything wet and hates the grass now, even if it’s dry! With me, I will drag him wherever I want to go; it’s my walk, and we go where I say. It is his walk with Sybil, and he gets to do as he pleases. Maybe he’s just bougie; he didn’t mind walking in the nice St Augustine in the courtyard opposite ours! That’s become the pooping side. I had to train him to not need long walks to poop for when Amanda takes him out. We had an issue with our garbage disposal not working. I did a quick diagnostic before we called for maintenance to come, but I couldn’t figure it out without my tester. They came by and remembered Tank saying his name as he walked in. Tank was a little too nosy and trying to be an electrical apprentice, so Amanda had to put him in his bed for time out. Then, I had to chastise him when he tried to revisit the maintenance guy. He acted like time in his massive bed was prison time!
The rent was due on the first; it’s crazy we’ve already been in the apartment for a month! We needed to make a few stops returning from the clinic visit. Amanda had been working on a pretty basket-type wreath for our door and needed to grab a few more things. I also needed to go to my Office Depot; I wanted to shrink some full-page maps to pocket size and laminate them for when I switch the yards. That way, I know where I’m at. Amanda says I’m extra when I do things like this! We had a Target pickup as well, and by then, it was dinner time. There was no way I had time to cook quickly enough to keep Amanda’s hanger away, so we ate at a nearby Olive Garden for soup and salad.
I was tired and didn’t sleep well. I just woke up mad, you know, one of those days. The day didn’t get much better either. We were up early for the first of two IV Bumex doses. The coordinator didn’t put the order in correctly, and we waited a while to get the medication. Once out, we hit HEB; I needed a noncurbside run to grab a few things. Sometimes I just need to see things to buy them! We had a huge grocery haul after that, too! We are still stocking up and getting some staples. Then, we made one more grocery run to Whole Foods before returning to the apartment for a short break.
I washed five loads of laundry once back home, then we got all the groceries up. We needed the towels, sheets, and clothes done. I barely had time to breathe before we were loaded back up to go to the hospital again. The parking situation at the hospital is terrible. There’s nowhere near enough handicap spots, which only added to my frustration from the day. Teia, the coordinator, had been working on getting home health lined up but hadn’t made much progress. We were waiting to hear if Dr. Nair wanted Amanda to have two doses of Bumex on Thursday, too.
We headed home, but Amanda wanted a Sonic, so we grabbed some drinks. The sides were pushed in pretty well on both sides of the stall we parked in. We got our drinks super fast, and I backed out. I heard a loud pop and crunch; I’d caught the passenger’s side mirror. When I went to check, the glass was hanging, and the front and back covers were completely popped off. Just adding to the already crappy day I was having. I gathered all the parts and tried to assemble them back together. I got the covers back on, but the part the mirror clips to was cracked and broken off the mount.
Once home, I did a more thorough inspection to see what parts I needed to fix. I wasn’t looking forward to driving back and forth to work and then home without a passenger’s side mirror. I swapped our laundry for the dryer and then went to the store to get some epoxy. The first round didn’t hold, but a second application got it good enough to patch together until the part I needed arrived. I sat down for a minute and checked the board to see what it looked like for work. I was lined up for Thursday morning, but the bottom had dropped out, and it looked like I’d get out close to midnight. I was then scrambling, trying to decide what to do. It seems work is going to be harder than I had anticipated.
I went back and forth on whether to pack up and go or wait. Amanda was feeling really bad, too. The double Bumex makes her hurt badly. She didn’t look good, and I fretted about going to work. I decided to go ahead and cook dinner. When I asked Amanda how she was, she’d just say fine while in tears. I finally blew a gasket after the day I’d had and I knew she wasn’t “fine.” I had too much on my plate with everything else, so I told her she had to make the call if I could go to work or not. I needed to go, but needed to stay too. It was not easy to take off since I don’t have family medical leave. I’m trying to save my sick days since we have a long year ahead. You may think Union Pacific would be understanding of my situation, but they aren’t and will charge me for taking off too much in a heartbeat. I’ve been there and done that too many times with all we’ve been through.
Amanda was worried about going to the hospital alone, too. We were both stressed out about things. She’s hurt felt like that before, but it was while in the hospital happening with multiple IV doses while she is retaining a lot. Sybil was gone, so we had no one to take the dog out. I was planning on staying and taking off but was waiting for Amanda to make the call. We have friends here who could help, but sooner or later, we will have to figure things out on our own. I also don’t want to abuse friendships with constant needs of help.
I was just going to get the things I needed to do around the house done and see if the railroad called. If so, I’d have to take off. If not, we could reassess and see how Amanda was doing. I finished dishes and cleaning up, washed the linens and got the bed made, and then it was bath time for Tank. The phone never rang, and I took a break to discuss things with Amanda. She felt she’d be ok by herself. I think she was also a little stressed about going to the clinic alone. We were going to need to figure things out sooner or later. It seemed just living here would be harder than we’d expected.
I got my things together for work and headed out about the time Amanda got in bed. I was worn out from that day, emotionally and physically; we both were. I arrived at the rest area a little after midnight. It didn’t take long for me to fall fast asleep in the back of the Yukon. I slept till the Yukon shut off from idli too long. I got out, restarted it, and went back to sleep twice during the night. The call I thought would have come in on my drive-in didn’t come till after 8 in the morning!
Amanda was a little irritated about getting the Uber to the hospital. We’d talked about it, and I figured it would be easier for her to use a wheelchair-accessible van. Surprisingly, one of those was cheaper than any of the other Ubers. She ordered the ride a little later than she should have, and the wheelchair-accessible vans weren’t readily available close by. They got her all loaded up and strapped in the wheelchair, but she said it was kind of a pain. The appointment was quick, just an IV Bumex dose and out. She called for another Uber, and they got her home quickly. She still felt crummy all day, though. It was about 9 in the evening when I got off and finally got home. I had hoped I would be off long enough to take her to get the morning dose of Bumex, but the phone rang promptly a little after six for me to get back to work.
I drove to the hotel and hopped in an Uber the company booked for me, and we headed to the yard office. It’s a big, nice office. I joked that it was a small ratty shanty the last time I was there. So many things have changed over the previous twenty years out here. On the way in, Amamda texted me when she was about to book her own Uber and asked if she could book an Uber with me on a ride. Even though the company books mine, it shows on my Uber account. Amanda and I just share my account. We stocked up on Costco Uber gift cards, two $50 gift cards for $80, a couple of times to save money on food delivery and rides. You can’t transfer the cards, either. I finally noticed after looking you could book for another person. She did that and booked an SUV instead of being wheeled up and in a wheelchair van. She ended up liking that better. Her procrastinating butt liked that they showed up only a couple minutes after she booked it too, after being late the day before!
She saw Dr. Nair and spoke with him a while in the lobby. After that, Teia the coordinator asked for Amanda’s address for home health so it seemed things were moving along to get the Bumex lined up for home. That would make things so much easier. The medication was approved so all we have left is the home health agency.
I had an uneventful trip home and was off after only nine hours at work a rarity on this side most days are 12 plus hours long I was happy because that would put me home around 10. Plenty of time to get a good night sleep since we were headed back home for the weekend for my union meeting on Monday. Amanda wasn’t feeling as bad as before. She was spunky enough to take an Uber to Whole Foods. She was checking out a few things they had she thought would work well for the kid’s easter egg hunt church. When I got home, she was back with papers sprawled between my recliner and hers and on the floor. She was doing accounting for work and getting caught up on a few things.
I got the trash taken out and the car all fixed so Tank could ride home with us. Half of his setup was in the Yukon since I was sleeping on his bed!. We packed up after that to head home. It’s such a weird feeling to pack to go home. It’ll be nice to be home for a bit. I was hoping we’d leave Friday to make it a three night stay but it’ll just be another quick trip there and back again.
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