NPO Week

This week should have been called NPO week. Monday through Friday, Amanda had to wait to eat until at least two or later each day. They’d plan to do something, then call it off in the afternoon, or she’d have a later procedure. Wednesday, she didn’t even get to eat; she had the cath then dialysis followed right behind it.

Thursday morning, an all-to-chipper pharmacist, who looked like she’d just graduated from high school, came in a little after 8. I was tired, so was Amanda, and she wanted to cover discharged medications. I really wasn’t having it, and Amanda was falling asleep during her 30-minute presentation; I wish I’d been sleeping! The team rounded right after the pharmacist. 

An inpatient rehab facility was brought up again. I pressed them on the discharge, too. It seems mid next week, after a biopsy, is the plan. If we are discharged early, I am for a rehab facility. She isn’t strong enough to go home yet. That only puts more on my plate, and I don’t want a fall or anything to set her back. We’ve done this enough, and whatever hat I’m wearing, whether PT or nurse, my vote is rehab. I made that known to the cardiologist as well. Even though Amanda doesn’t want to go, I’m using my veto power on this one. She nearly fell the other day when I was helping her up in the bathroom. Her legs just didn’t work and gave out. I was able to pull her up right until she got her feet under her. That was good for her to see why I am worried about her coming home right now.

The wound on Amanda’s groin is a lot bigger after the new wound care team treatment. They were changing the dressing after rounds, and I noticed the size increase and got the PA to come look. It was bigger but not nearly as deep and healing from the inside. She said she thought it was getting better despite the size increase. The tunneled dialysis catheter was the reason she was NPO on Thursday, and they came to get her mid-morning. They’d given her the pre-med valium like they did for the biopsy, so she couldn’t sign consent. I ended up going down with her to radiology, where an IR doc was going to place the catheter. We waited a while for the doc to show up for me to sign, then I headed back.

It was farmers market day, so while Amanda was in the procedure, I grabbed a few things. Amanda likes a hibiscus aqua from a Mexican place, so I picked that up and then went to get some flowers., There is a guy who always has fresh flowers, and I’d been wanting to get some, but you can’t have them in the ICU, so now was the time. After Amanda got back and felt like eating, I got her some quesadillas and empanadas. She ate a good bit; she was hungry after not eating in about 36 hours.

Amanda was tired like Wednesday after the biopsy, so she napped a lot. I was drained and napped for a good bit, too. After her biopsy, when dialysis started, I left. I caught some friends at a little dive place for a late dinner, then went back to their place. We all just stayed up talking forever. It was nice to be out of the med center area and in a more normal setting, someone’s house. I’m just going to have a little friend/support group all built by the time Amanda gets out of here!

Friday morning, I grabbed a wrap from Chick-fil-A. I parked and made my way in, and on the way up in the elevator, I got a call from a Vanderbilt number. It was Amanda saying they were to take her back to dialysis. I told her to give me a sec, and I could drop off her breakfast, but it was too late; they were taking her back. I got to the room, and they were gone. I was less than pleased, knowing she wouldn’t be back for at least 4 hours! I grumbled all the way back to the car, sat there and ate Amandas breakfast, then madly drove back to the apartment, wishing I was still in bed!

I did get a few things done around the apartment. It is crazy humid, and I bought a good dehumidifier that has a pump that drains instead of having to dump it daily. It pulls about a gallon and a half of moisture a day out of the air. I have it in our bedroom and routed around the corner under the door to the washer drain. It makes the bedroom warmer with the air it pushes out in a smaller room. So, I’m going to put it behind the dining table and route it through the wall to the bathroom sink drain. It’s a little bit of work, but it will be worth it and a small hole to patch when we leave. I know it’s a bit much; it’s just how I am. Amanda would say I’m “extra” for doing that! I didn’t get the hole drilled, but I got everything ready to.

I needed the time away to get a few things done outside of the apartment and the hospital. I made a few Amazon returns and stopped by The Joint to get an adjustment. I really needed one, and it had been a few weeks. I need to start taking a break to go and get things like this done. It would have made sleeping on that chair for so long a lot easier if I had! I’m starting to realize this is a marathon and not a sprint, and I should be taking better care of myself. I grabbed some lunch from a Mediterranean place around the corner from the chiro office, then headed back. 

I was listening to Acoustic Story Time on SiriusXM as I drove in from the apartment. It’s a live Christian singer/songwriter show with an audience, and a new one comes out every couple of months. I knew it was recorded in Tennessee at a coffee shop, but I did not know it was recorded in a coffee shop around the corner from the apartment in Brentwood! I immediately looked to see when the next one was. August 12th was a bit too soon, but I was thinking we may be able to make the next one. 

On the show, there was a quote that stuck out to me. “Life really begins at forty. Up until then, you are just doing research.” A little ways into my forties, I feel that is so true. I have found myself more in the last few years than ever before. I used to try to fit into boxes of this or that, but I’m a little too odd-sized to fit into any box, in both metaphorical and literal sense! I feel I’ve embraced my “odd-sized” uniqueness more so in my forties than ever before. Plus, with Amanda being sick for so long, it felt like we were never able to live until we were in our late thirties and early forties. Though that has come to a screeching halt now, we’ll pick back up soon enough. Also, I feel that after your forties, you’ve racked up enough life lessons, maybe a little too many hard times lessons for us, to know how to do things a bit better. Not that I don’t have some life lessons learned now, but they are much farther apart than in my twenties; lots of resarch done then! 

As I got back to the room, Amanda had only beaten me back there by a bit. They took a liter off when they were shooting for two. Her blood pressure couldn’t be tolerated anymore and dropped too low, which concerned me. She gets dialysis 3 days a week; she takes in over a liter and a half on average, so doing that math, it seems we’ll be pretty fluid heavy in a week, but I’m no doctor. 

We had someone from an outpatient rehab facility show up reping for their place. I didn’t know we were going to have a choice. Of course, they showed up as we were about to eat! The cardiologist had mentioned a place I walk by often on the south end of the medical center. I figured that was where we were going. My biggest question was where it was and parking; we didn’t need any more added costs. The location wasn’t that far away, but in an unfamiliar area. The area alone wasn’t pleasing to me. I hadn’t heard their name much, and their quickness to come by to try to swoop us up had me leery. 

PT showed up right after to get Amanda up and walking. There was an extra training, so I grilled the third wheel in the back who was following with a chair. The place the cardiologist had mentioned was outpatient rehab, not inpatient. I was telling him how we came here for Vanderbilt, even rehab, but he told me Vandy doesn’t have one. There is one right next to the outpatient center with “at Vanderbilt” after the name, but it isn’t part of the system. Location-wise, it is better, and here in the med center, close to the hospital. It seems to be where most everyone goes, according to the PT, and the best choice. Their recommendation was still for her to go to inpatient rehab. I expressed my concern about her weakness, but if she were up a few times a day, I think she’d make strides, they concurred.

As I was in the bathroom, Amanda hollered that she was bleeding from her vas cath, the large vein IV in her neck. She’d pushed the button, but no one answered. I ran out of the room and grabbed the first person in scrubs I saw. He came in and applied pressure. It wasn’t bad; blood was still pouring down her chest, though. The guy I grabbed was a respiratory tech; he called the nurse, and she came in, grabbed supplies, and took over. The vas cath was coming out anyway, so they called the NP to come and get it out instead of redressing it. I had to tell them to do that and stop them from putting more tape on her. And of course, I had my drawers down the one time she had a semi-emergency! 

She was still super sleepy all day, too. I took care of a few things and also worked on a photo book. We’d always talked about getting hardback photo books of all our post-transplant trips, especially the heartiversary trips, made. So, I made one of our first heartiversary celebration and the subsequent Tennessee trip. The year mark is a big deal in transplants, a real milestone to celebrate for sure. That trip was amazing, we hiked all over, chasing waterfalls and bears. I thought it would be good inspiration to have around the apartment. Plus, we are in Tennessee, so it’s sort of like a fine book of local pictures to display! Amanda doesn’t know about me making the book, and it will be a surprise; she’ll find out about it when she makes it to the apartment.

I’m getting a little worn down with leaving so late. Amadna’s 9 pm meds are never given on time and don’t come until almost 10. It takes her a while to get them all down, then she’ll need to go to the bathroom and get situated in bed. It puts me leaving the hospital after 11 pm. Then I have a 15-20 minute drive, plus picking up the mail or packages. At best, I get to bed by midnight. With a 6:20 alarm set, which I snoozed for almost 30 minutes today, I’m getting a little worn down. I don’t mind getting home late, but I do mind the early alarm. If I’m going to make rounds, I need to be there early, though. I’m about to wean Amanda on being tucked in.