Moving Along

When I got to the room Saturday morning, there was a box of masks taped to the door with ‘please wear a mask’ written on the glass. I’d left the room yesterday, gone to the apartment, and come right back. I didn’t think my wearing a mask was going to protect Amanda much when we had been sharing drinks and food. There was a nurse training who asked me to put on a mask. I did, but I took it off when he left. The real nurse never said anything. Turns out she was on neutropenic “low white count” precautions. Her white count has been low for a while, I guess the nurse was just making sure the new kid did things right. Her white count was actually higher on Saturday; it was just a dumb hospital policy. Like her contact precautions that last for 3 months because of the pneumonia that cleared up a month ago! 

Amanda looked rough; I could tell she wasn’t feeling good when I got there. Nephrology was the first to come by, so I questioned them about dialysis, only pulling a liter off. They didn’t seem concerned. I hope they’re right, but the numbers just don’t add up to me. The team, consisting of only the NP and cardiologist on the weekend, followed next. They didn’t think Amanda was too fluid up. She mentioned the difficulty breathing when lying flat. The doctor said he didn’t necessarily think it was from fluid and wanted to check other things. They were thinking it’s the diaphragm. Amanda had issues with it after the first transplant. It was partially paralyzed from the surgery, but did eventually come back with time without surgery. He wanted to do a sniff test, which is where they check to see how much her diaphragm expands. The cardiologist was thinking that when she sits up, its expand better, and when she lies flat, it compress.

They were supposed to give Amanda a shot to help her white blood cell count rise on Friday, but they never did. She caught it today and told the nurse. Since she was groggy, I don’t think they thought she was right, but when they checked, they saw she was right. It seemed the pharmacy just never sent it up, and the previous nurse never followed up. 

The wound on the other leg is still draining badly; the dressing and medication they are using just help absorb things better. The team wanted to get surgery to come look. When the surgeon came, there were a couple of options available that he spoke of. One is another surgery, to open her up and go in and repair things. The other is to use a nuclear tracer in her lymphatic system to find the spot it is draining from and put some fix-a-flat, so to speak, to clog the hole. That procedure is the least invasive and would be done in interventional radiology. He’s a fellow; the IR approach was newer to him, and he needed to defer to the attending on how to move forward. He did place a wound vac on the site to keep it dry. Amanda’s skin was already breaking down and badly irritated from constantly being wet.

She has been super tired since the procedures last week. Not sure what it is. Likely some medications, she is thinking of pain meds, but they typically don’t zonk her like this. She has been off the IV pain meds since we got to the step-down unit and is using less of the oral med, too. It may be time she is weaned down or off the current med to a less potent one. With the low white count, everything is having a hard time healing, too. If it’s a hole in her, such as the groin access from the filter placement, an old IV, or anything, it is weeping or oozing.

I had told Amanda I wasn’t going to tuck her in. I planned to leave around eight. She asked for her meds early and needed help to the bathroom a couple of times, needed a lot of other help, and I still didn’t leave till about 10. It was like she stacked all the things she wanted help with right when I was ready to leave. Needless to say, I was frustrated. I get it, I know how she likes things, but I’m having to be the caretaker while we’re surrounded by paid caretakers. I’m getting burned out, and we aren’t even home yet. Once Amanda gets home, I won’t get a break; I’ll be a 24/7 caretaker, nurse, PT, OT, and everything in between. We’ve had the apartment for over a month now, and I haven’t even been there to sit down in my chair and take a break, except for when Brittany and Larry were here. I get there and go straight to bed. Then I get up, shower, and head right back to the hospital.

I’ve never been one to have a drink when I’m frustrated, stressed, or overloaded; growing up, I saw family do that in hard times, too much. Even at a young age, I saw that the problems were still there the next day after drinking, and I just didn’t see the purpose in it. As a Christian, I’ve learned to lean on Christ and not the bottle. If I didn’t have Him, I’m pretty sure I’d have had a big drink of something strong last night, though. I really don’t know how I could cope. Instead of a drink, even though I wasn’t even hungry, I stopped and grabbed some Nashville hot chicken! So, if you’ve been worried about me going down a dark hole, don’t. Am I tired, frustrated, and overwhelmed, yes, but I’m coping. This isn’t our first rodeo, and I’ve been conditioned for this with years of experience. My trips to Hopdoddy to sit at the bar of the burger joint are to talk to friends, for fellowship, and not to drown my sorrows in booze. Well, I may drown them in some fries and queso there every once in a while!

With an extra hour, I did sit for a second in my chair to have my emotional support hot chicken at least, but it was right to bed after that. With a little extra sleep, I didn’t hate my alarm as much as I had in the previous days, but I was still tired this morning. I grabbed some tacos on the way in for breakfast. It was a place recommended by a friend’s daughter, who lives here. It was in the 12 South area, usually crazy busy every time I’ve been there. When Britt and Larry arrived, we went there for breakfast and just abandoned the idea because it was too busy at 10 on a Tuesday morning! I figured it wouldn’t be that busy at 7 am on a Sunday. The usually tourist crowd was sleeping off their hangovers, I figured. I was right, only locals around and a ton out for that early on a Sunday morning. Thirty and forty-somethings are out exercising and walking with their babies in everything from strollers and bicycle seats to backpacks! 

I had a list of things to cover this morning with the team. They didn’t have much new for us. The NP was going to adjust the night meds as I requested so that Amanda would get her meds earlier. The cardiologist said that for all that Amanda had been through, she looked good. He said that she was progressing well and had a great cheerleader looking at me. I told him, although she does want to throw things at me, and he said Well, that’s how you know you are doing it right! I’d been on her case about drinking her protein shakes, so she hadn’t been that happy with me. He also mentioned that he wouldn’t be back, Dr. McChicken will be rounding.

Amanda has been weak, and I’m having to lift her up when she gets up. I really don’t see her getting better. We’ve regressed a bit. I think she needs more PT, but they won’t even come every day. Sometimes, it’s 3 days before they will come by. We only had them twice all of last week. The inpatient rehab will work with her 3 hours a day, 5 days a week. That’s what she needs. I’m glad we aren’t going home right away. I emailed the social worker to get me in touch with someone who handles the coordination of rehab facilities. The one we want shows to be a Vanderbilt place. I just want to make sure we get on the list early if needed. The therapist liked my shirt today. I was on Facebook the other day and showed Amanda and said I need this shirt. She said you deserve it, so I made a pure Facebook ad purchase. The shirt just says Biblical Beard. It came with a handwritten note that said they hope the shirt creates an opportunity to share Jesus and your epic beard. I guess that figured if you’re brave enough to wear the shirt you have an epic beard!

Amanda needed a blood draw, but the nurse could see she would have issues, so she just had the IV team come with the ultrasound machine. Her arms and face are swollen, not sure why. The moon face makes it difficult to determine when it comes to her face and neck. I asked the nurse about the dialysis time tomorrow. She’s been checking for me, but nothing. I just don’t want a repeat of coming in, then just to turn around and go back. I don’t understand why it’s so hard for the dialysis lab to get us a time. The plan is a cath on Tuesday or Wednesday, then discharge after that. It’ll be a busy week with that and the IR team fixing the lymph drainage, plus dialysis 3 days. They said they won’t do the lymph fix inpatient and would likely do it once we’re out. That was a bit confusing, not sure what makes a difference whether she’s admitted or not.