Looking back, with me starting to write yesterday’s post in the morning while we were processing things and finishing in the evening after we made a decision might have been confusing! We are 100 percent going to Nashville for Amanda to be admitted solid till transplant. I think it was a sign in itself that we were left with the choices of listing now with Vanderbilt admission only, or the unknown of waiting a month and a half for Methodist even to consider the listing. The decision was hard, but easy at the same time. We knew the right choice; we just had to make it. As a friend said today, a bird in the hand is better than two in the bush. I genuinely believe we will get the best care for Amanda’s complicated case at Vanderbilt. There is still the unknown with all of this. It will be hard to float everything, especially with me only working two weeks of the month, but something is better than nothing. We’re just trusting in God to get us through. He’s done it many times before.
So, there has been a lot of planning after the decision, and there is still a ton to figure out. I put in our move-out notice today, which was the end of July at the earliest. We’ll be moved out long before then; we already had some friends who volunteered to pack up and move our things, and friends who have a larger trailer to use in Houston to get everything moved. We’ve amassed a good bit more than we came up with, so they’ll need the extra room! The question is, do we move it back to Brackettville or just have it come to Nashville to be in a storage room until we get an apartment. Either way, the quicker we vacate the apartment, the faster someone else can rent it. We will be off the hook for the rent if someone else moves in before our set move-out date, which could save us a good bit. So, a prayer request is that someone takes our apartment soon. Depending on when it is packed up and moved, I may not even return to the apartment. Amanda’s packing is easy; she will be inpatient and not will leave, so she won’t need much. I will need to pack a good bit, you can bet I’m not going without all my extra underwear this time!
When back home and working, I will still stay based out of San Antonio and work to Houston but live in Brackettville. The drive is about 30-45 minutes shorter than from Houston; if I push it and show up a little late, I can take my call from home. I need to stay out of San Antonio to be in close proximity to an airport. My worst fear is that Amanda will get the call while I’m on a train. So, being close to Houston or San Antonio is best, and not in the middle of nowhere, West Texas, with no cell service. I will likely keep my suburban in Houston to be able to get around while there. I have an away-from-home car in Alpine that I will see about getting back home. I wanted to get it back to sell to make a quick couple grand, but I may need it to get back and forth to work. Someone had the foresight to line up a few people with excess airline miles to fly me back and forth for a while. Things have been lining up without us even working on them. All answered prayers we didn’t even know we needed; that’s all God!
Tank is an issue, too. There’s been so much in and out this year, plus losing Zoey. The poor guy doesn’t know if he’s coming or going! We are thinking of having someone house-sit for us. It’s tough, and he is part of the family, so we don’t want to just throw him with someone else in a place he doesn’t know. Last transplant, my brother-in-law’s house sat and became a dog, well a Zoey and Tank lover after sharing a bed with them for a few months! Tank was pretty clingy last night with me. I think he can sense the tension in all that weighs on us. He’ll be super excited when we load him up to go home tomorrow.
We will be going home tomorrow. Hopefully, an early discharge, or I’m getting on the phone, not to be nice to someone about getting us out of here! We’ll come back Monday to pack what we can to be ready to move. I also got a little too comfortable adding things like keyless door locks, peephole ring camera, fan remotes, new shower faucets, motion light, and whatnot, so I need to take that all down. I thought when putting some of it up that I was going to hate myself when the time came to move, well, that time is here! I still don’t regret getting the apartment or making it home. It was just that, home, for us, I even started calling it that. I know I said I would do a video before, but I’ll try to get one before we leave, it really turned our cute. Nothing besides what’s in the fridge will get wasted since we’ll need it all for another apartment in Nashville. After packing a few things up and getting what we need, we’ll roll out on Tuesday afternoon, driving to my aunts to layover. Then finish the drive up on Wednesday. We talked about going straight to the hospital, but I suggested we stay in a hotel a night or two to decompress and spend time together, not worrying about things, but going out to dinner, a movie, a show, or something. Try to feel normal for a minute while Amanda isn’t fluid overloaded, and to breathe her last bit of fresh air for months, or who knows how long. There are a million more things we need to flesh out, but I think we have a solid plan.
Amanda has felt ok today, better than yesterday, and was down 5 more pounds this morning. She needed a couple of bags of magnesium and some more iron, all the peeing is stripping her body of electrolytes. We waited all morning for the coordinator to call, but she didn’t call all afternoon. With Amanda’s antibodies, there won’t be a need for desensitization, their expert said. There is a 15-20% chance of a compatible match with a heart. She said it may sound bad, though it’s not 100% (Amanda was 95% for the first transplant), it’s still a decent number, mentioning she had seen way lower numbers that got a heart. The need for inpatient care is also to get her higher on the list to shorten the wait. The cardiologist was worried about keeping Amanda out of the hospital and what the fluid might do to her other organs. The constant up and down with the fluid isn’t good. They will more than likely keep her on a Bumex drip 24/7. We are scheduled for a Friday admission unless we decide to go in sooner, but to be honest, we need a break before going in. This will be a tough admission and make the couple of months earlier this year look like a cake walk. I’m just hoping there’s a place to wash my chonies to keep from having another underwear debacle!
I was officially approved for the 2-week on 2-week off leave of absence schedule. I was hoping to start it now for 3 weeks and then do the two, but that didn’t go over well. I didn’t want to push my luck, so I will use sick days and vacation to make it work out. I will still start the leave next Wednesday. It was an answered prayer that I could do the on-and-off leave! I hope I can get 45 days to 2 months after the transplant. Then back to the 2 on 2 off schedule.
We had a great time this afternoon. Jenny and Jeremy, heart friends who live not far away, came by and kept us entertained all afternoon. We’ve been sad that we haven’t been able to see them as much as we’ve wanted. Either we were down or they were, and things hadn’t lined up. So it was good to get to spend some time with them. It’s a special bond with people who’ve been through similar situations. They stayed for 4 or 5 hours with us. After they left, I ran to grab some Salata salads for dinner before they closed.
I hope we don’t have any issues and can get out of here at a decent time tomorrow. We will go to the apartment first to pack up a few things for Amanda; I don’t want that responsibility; grab Tank and hit the road. I’ve already been hit by a few who want to know how to help. I will list a few things soon: a big fundraiser in the works for Brackettville, a GoFundMe is getting organized, and so on. Amanda saw somewhere that Vanderbilt encourages you to decorate your hospital room like an apartment, so we’ll need a few things for it. Don’t expect much from me in the way of posts until we’re in Nashville next week; we’ll be busy till then!
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