Waiting

After taking the tree down, I had to make the final declutter run through our stuff. I got all of it loaded up in a big Christmas gift bag and made my final run to the car. While putting things in the Yukon, I looked at Amanda’s license plate. We had a vanity plate made to spell out new heart. I was thinking even with the issues, we’ve had a good run with this new heart. Amanda still has a better quality of life than before. A new heart isn’t a cure; we traded many things for a new life. It’s more of a long-term treatment; we’re just dealing with the side effects. Not everyone has the same results with a transplant. Some, by four years out, have had tons of rejection bouts, are already re-listed, have a new transplant, or sadly, some never make it out of the CTICU we’re in right now. All in all, we are blessed.

After I made my drop off, I swung by StarBs for a refresher for Amanda. I walked down a different way from the entrance of the hospital. It was smoker’s alley for a half-block! Everyone who needed a puff was lined up on hospital property since it’s a smoke-free campus, even outside. I noticed a life-size gingerbread house by the Children’s Hospital. I showed a picture to Amanda, and she said she just needed the right supplies, referring to her gingerbread house!

Dinner was sushi from a nearby restaurant we’d eaten at before. It was good. We had a few veggie rolls, nigiri (just veggies atop sticky rice), and robata (grilled veggies). I wanted something light; I’ve been hitting the snacks too hard! Although salad and sushi were too light for Amanda, she still needed a snack afterward. She was also feeling up for a third walk after dinner.

I don’t think the night nurses do walks very much. When the nurse came in, I told him I just needed him to unhook the machine so I could walk with her. Once we got loose, mobile tele monitor still attached, we took off down the hall ourselves. Going by the desk without a nurse, they began to freak out, checking their monitors for her readings. Then, seeing I was carrying the mobile unit, we got the ok, but they still looked slightly worried. Most everyone here only walks with PT or a nurse. I joked with Amanda that I had a leash; she didn’t find that funny at all. That was the worst side eye I’ve gotten here yet!

On our walk, we saw the EP doc that showed us all the EP study pics in the hall he was going into the nearby CVICU. He stopped and talked to us for a while, wanting to go over what they had changed and asking how she was feeling. Three laps is still the limit; she began to get chest pain on the last lap. 

After our walk, we settled in for a movie. We are still waiting to see if we can get a room, but it doesn’t look promising. The night nurse said he had a patient waiting to go up last night, and they were still here. Today was the best since the ablation. Amanda hasn’t needed any pain medicine today, but I don’t know how much she’s pushing it. The rate still seems unimproved, holding around 115 to 120 and reaching the upper 120s on the walks.

I’m not sure what the plan is or if they’ll even consider talking about another ablation. Which I think is good. I’d like to see how she does when we go home, but at the same time, I don’t think it’s very functional for her to go home with a 120 resting rate, as well. I have a feeling they will want to increase the current medication and see what it can of. They have already increased one of the others. We’ll likely go home and play with medication dosage. It’s not the most fun when trial and erroring with meds.

Praying we can figure things out here, and they don’t send us home with a high rate and no solid plan to get it under control. We fought this fight many times before with rate issues. It’s difficult enough to get things done here, much less when we’re home. If we get out of here, we will return next week for the first immune treatment and a biopsy, so we may be able to get consults as well.

The last prayer request isn’t for health but for our finances. I’ve explained how my reserve-type board works before. I haven’t gotten called again, but if the railroad calls before midnight tomorrow, the 31st, I’ll lose a half month’s pay. I really hope I can continue to make it without any issues. With New Year coming up, it’ll be a toss-up. So far, it has worked great. When I was home, I explained the situation to someone, and he knew how it worked. I was on the same board last year on the mission trip; he knew I got paid to do ministry on that trip. When praying for me, he said Lord, and we ask that Barkley get paid to take care of his wife! That is precisely what I’m asking: to get paid to care for Amanda! I’m blessed to have a job where this can even be an option.