Sunday, Amanda’s weight was up again, not much, a pound, 1.5 the day before. It may not sound like much, but if you do that for a week, you’ll have 10 pounds real quick. They added one bolus that was only 1mg more than a single push she was taking three times a day at home. I wasn’t too interested in battling the doc during rounds since it was his last day. As he looked around, he said nothing new, then noticed a bag. It had a nail lamp, and he asked what that was. Amanda told him it was her nail stuff, and he sighed loudly and said, “I asked for a whiskey bar and we get a nail salon!” Before he left, I asked for a referral to a cardiologist to see about my congenital bicuspid valve. It’s been years since I found out about it, and I haven’t followed up. I only attended the initial follow-up after I discovered it, we’ve been a little busy. He is the director of advanced congenital therapies, so I figured he was the guy to ask, thinking I may be able to see him. He gave me a recommendation and said a regular cardiologist could follow up easily. As he was leaving, he said, “That is Mickey Mouse stuff compared to this,” while pointing at Amanda!
I needed to get a few things out of the car and needed to offload my dirty clothes; that’s all I’m taking home! I was rooting through bags to get some specific things for Amanda, while on FaceTime with her. I was grabbing a few things, and she became overwhelmed, saying, “I already have too much to worry about if I get discharged without you!” I told her, “You aren’t getting discharged without me here, so where are they going to send you?” Discharge isn’t an option. We will have to play hardball if necessary.
After I was back, we went for a little break outside. The doctor approved the venture but said he wanted her to walk. She could take the wheelchair, but only use it if she needed it. So, she pushed it all the way to the elevators across the skybridge and rode from there. She wanted to sit in the sun a little bit. I encourage her to go outside while I am gone. She can go out in her wheelchair easily by herself. After that, I ordered dinner, we had Italian. Our evening nurse was from Boerne, near San Antonio. She just wanted a change of scenery and moved after graduating from nursing school. We had a good time laughing about the fake hats and white cowboy boots. We all longed for good tacos, but were glad to have good biscuits.
Today, Amanda was up 3 pounds; I just wish Dr. McChicken were here to see it! Once she gets this much fluid on, it’s unstoppable with what we were doing at home; 3 separate IV pushes of diuretics a day. When the new PA arrived, she likes to come in too early before the team; I was asleep. I heard her say we and I popped up out of my slumber, looking all ghetto in my sleeping tank top and shorts! I thought the whole team was coming in, but it was just her and a new guy. I wanted to plop back down since it wasn’t the doctor. I was behind the curve, all groggy with sleep in my eyes. I put my glasses on to see the weight charting, but they didn’t record it. Probably good, I didn’t see it; otherwise, I might have given a na-na na-na boo-boo we told you to them about the weight gain!
It was a good start with the new doctor, who followed about an hour and a half after the PA’s early morning list, to see the rapid gain on his first day. He reminded me of our dentist back home. She is very soft spoken, caring, and attentive. I liked the way he carried himself, not a self-righteous know-it-all. He wanted to hear from Amanda and not just come in and say what his plan was. He paused for questions; we had none at the beginning, then he delved into his plan. Mentioning the high antibodies, he said the wait might be some time. His plan was to get her higher on the list, but he needed ammo to get an exception approved. He wanted to repeat a VO2 test, a stress test on a bike that Amanda had already done. He said that if they can show how her performance has decreased, it might help. His team had fallen behind and didn’t know Amanda had already had one in late May, here on our initial visit. For now, that is on hold; they want at least 6 weeks to 2 months between tests.
Next in his arsenal was another cath. His thinking is that Amanda’s output on the last cath looked good because her heart is so fast. It makes sense; her heart is running twice as fast as it should be, and the output was normal. If you slowed her heart down to a normal rate, then the output would be lower and make her look as bad as she really is. The normal output was confusing to everyone. Amanda is just special in that way, and confusing to me sometimes, too! This cardiologist’s solution was to have her exercise to achieve a higher heart rate and demonstrate how her heart output does not perform well under stress. All of this exercise will be done while she is undergoing the cardiac catheterization. Yes, you read that right; while catheters are threaded through her veins and into her heart, measuring pressure, her feet will be pedaling away. Can you say crazy town! I thought we were familiar with most types of caths, EP studies, biopsies, and so on, but I guess not, because this was new to us. I had to put my Google fu to work. To quote the now classic, Dodge Ball, “Bold statagey Cotton, let’s see if it pays off for em!”
I like the tenacity of the new doc. He came in thinking outside the box with a “let’s get her higher on that list” attitude. When I asked McChick about the exception for a higher status, he just shook his head and shrugged it off. Not this doctor, he comes in swinging for the fence right away. She is scheduled for the cath tomorrow, but we don’t have a time yet. I’m assuming they will be going through her neck with this one; it doesn’t sound safe through the groin! Honestly, it doesn’t sound safe either way, but this is why we came here to get things done. This obviously isn’t this doctor’s first rodeo. I’m sure this won’t be done under near the sedation she will need to keep her comfortable, and she will likely be miserable. Not to be too abrasive, but this is where the no pain, no gain comes in; I know she would choose the pain now over extra months in the hospital waiting. Big prayers that the pain won’t be too much and that they get the ammo they need to get her bumped on the list.
Amanda’s heart rate is getting higher in the evenings still, since the new medication. She thinks it has helped with the chest pain. Her walking seems to be better. Well, maybe it just seemed better today because I took her for a walk to the knock-off Starbucks on the floor above! The walk was a little longer than a full lap, but she got a short break in the middle while we waited for the latte. The coffee wasn’t our normal, but still good; I just wish we could use our StarBs stars or at least earn them. It will be easy for Amanda to get there on her own while I am gone. I gave full approval for her to drown her “Barkley’s gone” sorrows in daily lattes and refreshers. As long as she walks there and back, I said we could swing it!
It was raining on and off after lunchtime. I needed to make a run to the cleaners to pick up some jeans I had cleaned and starched. After waiting for a break showed on the radar, I took off. It wouldn’t matter; I got rained on down and back, not bad but still annoying. As I picked up my jeans, the owner noticed my shirt and pointed at it, saying I like that. I had my Faith over Feeling T-shirt on. He continued and said that he needed that today. I said we all do. In reply, he said You never know how you can impact someone. I told him about our situation and how I’d seen God move in so many ways through it. He quickly said he’d be praying for us, then said “I need a hug” and darted around the counter to give me a big, long hug. He may have needed the message on my shirt today, but little did he know I needed a big hug from a stranger, yet a brother in Christ.
I grabbed lunch at the coffee shop we ate at on the day of surrender, which was next to the cleaners. I hoofed it back in the rain, trying to make the half mile go by as quickly as I could. We had lunch, which was very good, and took it easy for a while. In the afternoon, we took a field trip to the cafeteria. Amanda again pushed her chair to the elevator. She wanted to know how to get to the cafeteria so she could get some veggie sushi rolls while I am gone. We got a refresher while we were there, then shared it while sitting outside watching fat squirrels run around. They are everywhere, and most trash cans have holes chewed in them for easy access to the buffet. A lady was feeding one nuts, I threw a strawberry out of our refresher to him, but he just turned his nose up at it!
In the evening, I made a run to get a couple of grocery pickups for Amanda while I’m gone, and I grabbed dinner. On my route was a Vietnamese place a friend recommended, so I grabbed some bao, dumplings, and pho for dinner. I’m hoping the cath is at a decent time for Amanda and not so late tomorrow. I also hope it really does happen tomorrow, as I have a flight home on Wednesday morning. With this cat being so different, I need to be here for it.