Last night, as I walked the hall to get some ice and water, the charge nurse said she just found out Amanda was back. She mentioned that when they called about a high heart rate, she looked at the board and saw Amanda was the culprit, telling them Oh yeah, she’s ok, we don’t worry until it’s 150 or higher for her! I’m pretty sure we’ve had most of the nurses on this floor or know them in passing. I can distinguish most of them by their voice over the intercom! It will be different, not knowing the nurses and team when we transition somewhere else. We had Chinese from our favorite take-out place since Amanda wanted soup. It is nice to have a fridge at home to take the leftovers too. I told Amanda that we needed a very mini fridge at Vanderbilt for an extended stay in the hospital. I said, think of the money we’d save eating leftovers and storing fruit!
I went home later than I wanted. I thought I would be going to work early in the afternoon, so I wanted a good night’s sleep. I had to take Tank out and pack for work, so I could just leave from the hospital. I woke in the middle of the night to find Tank had abandoned me to go to the guest bedroom to get all snuggled up in the pillows! I guess he thought I kept it too cold without an extra body or pillows for warmth. I told him Hey, we’re a team, you can’t leave me hanging like that. After a big stretch, he got down and came to pretty much lie on top of me; I did turn the fan down a bit for him; I’m a good dad! Amanda and I talked about him staying with us in Nashville. It will be a pain and makes places harder to find, but Amanda said it best. He only has a couple more years, at best, maybe not even that long, so he has to go with us. In the meantime, I’m unsure what we’d do with him, whether he’d stay here or go back home.
I was tired when I woke up; I was just lagging and haven’t caught up on sleep. I called Amanda to see how she was and said I’d be along shortly. She had lost 7 pounds overnight; we are headed in the right direction! I was lazy and didn’t want to walk to get coffee, so I was going to order from a Kroger Starbucks on the way, but they were out of honey blend, a crucial ingredient for Amanda’s flat white. It reminded me to park in a different garage, the cheaper one, with a Med Center StarBs on the way. I showed up with coffee in hand, and Amanda was at the sink. She was washing her face, but looked like she was crying. When she turned around, I could tell by her expression that she had been crying and was worried. With a whimper in her voice, she said Vanderbilt called. Those words, that voice, with that face made me think they had denied. My heart felt like it dropped to my stomach. She said they approved but thought she was too sick to stay out of the hospital. They wanted her admitted there until the transplant, mentioning they would never send a patient home on IV diuretics. I think we were in a unique spot with Dr. Nair allowing that, he would have kept her inpatient if they had listed her here, I’m sure. Vanderbilt wanted to do a direct transfer, or for us to come up as soon as we are discharged. The coordinator knew Amanda wanted to go home before coming up and said it was ok for us to come up next week, but we needed to come soon.
We still weren’t sure we could swing it or how we’d go about it. We’d talked about a million scenarios, but not the one where they wanted her now and straight to an admission until transplant. The options were limited, and the decision on their end was made, which made it easier to a degree. We were still left with a difficult decision. We began fleshing things out, and Amanda got nauseated. Though we’ve been through a lot and I’ve never seen her like this, I think it was nerves. I called for nausea meds, but there was nothing ordered. The hospitalist, not the new one, one we know, called in a med, but they don’t keep it on the floor. With the pharmacy backed up, our nurse eventually had to go down to retrieve it herself. It was almost an hour of nauseous agony for Amanda before she got the medication. I think the weight of everything just hit her pretty hard. She was feeling so bad that she never even took a sip of her coffee, which is pretty bad for her!
We talked about things a little more when she felt better. The coordinator had said she could call if I had any questions. The first was to double-check that I could stay in the hospital with Amanda, which makes a big difference not having to pay for a place for myself. We have a 60-day notice with our lease for move out, too, so we’d still need to pay for the apartment for a bit. Our lease is up at the end of next month, but the notice is still required even after the lease is up. Our first-floor apartment is sought after, unless the leasing agent lied to get me to commit! So I hope we can get out of it when our lease is up, versus the extra 20 days. The coordinator got back via their portal, which seems to be the quick and easy way to get hold of them, to say I could stay in the hospital. She also noted that their antibodies hadn’t come back yet, but she thought it shouldn’t take too long with Amanda’s tiny size and type A blood to get a heart. She’d have a better guesstimate after their antibody levels came back.
Amanda hadn’t felt good most of the day, passed on lunch, and hadn’t even drank much. I encouraged her to drink some. Her output had slowed a bit, but as I look at my I&O charting, she is already at almost 2 liters out and only .5 in. One of the kidney doctors told us once that sometimes the kidneys need a little boost by drinking some. She finally felt like something, so I grabbed the requested refresher and a pita pocket from StarBs. I got some lunch from the neighboring Chipotle for myself. She worked on the refresher and will finish it sooner or later, but I had to finish the wrap!
The hospitalist finally came by to see us, but the transplant team never did show up. They are working from afar because they have put in a few different orders throughout the day. I hope we see someone tomorrow, because I need to set them straight about us getting out of here Friday morning. I was going to work this afternoon, but my trip got pushed back till tomorrow morning, and that will get in the way of getting Amanda out. Our plan as it stands now is to go home this weekend and get things situated, say our goodbyes, and come back to Houston Monday or Tuesday to pack up and leave for Nashville again.
I got ahold of my manager, who happened to be with the service unit Superintendent when I asked about a leave of absence. I requested two weeks on and two weeks off. This way, I can return and work enough to keep my insurance active and make a little money. I only keep my insurance if it’s a medical leave of absence for myself or if I have FMLA. I’m still kicking myself for not applying for FMLA earlier in the year to have had the hours needed to qualify. There’s no way I could have known what would happen, and there is nothing I can do about it now. Chalk it up to a hard, real hard, lesson learned and move on. I’m just having a hard time moving on from my dumb mistake! Anyway, it looks like I will be allowed to take the on and off leave of absence. I feel I may not need to do it for very long, though. I know we haven’t gotten the word back on the antibodies, but I think this will go quickly, maybe not 10 days like last time, but quick nonetheless.
The coordinator messaged back that their antibodies came back. She wanted to talk with the cardiologist after she spoke with Dr. Nair, and then get back to us. We waited for a call in the afternoon, but she never got back to us. Amanda will message her about what time to call since the coordinator wants me to be around for the call. Today has been a whirlwind; it still feels like morning to me! My brain is on fire from trying to figure things out. Amanda is feeling rough still; the Bumex drying her out makes her body hurt, and she is moving more slowly from the pain. It’s crazy that a week ago we were on the Vanderbilt just as a backup, and now in a week we’ll be back in Nashville for admission till transplant. We still have a ton to figure out, but we’ll get there. We know God’s got this and will see us through. He’s done it before, and He’ll do it again.
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