More Waiting, Then a Busy Day

Tuesday was more waiting. They had Amanda NPO again, then allowed her to have clear liquids till noon, then nothing, eventually pushing the IVC filter placement till Wednesday! Any day waiting for the cath lab would be a frustrating day if you were a newbie to this. We were waiting for wound care and the surgery team to come by, also. The wound in her groin from a cannula of some sort during surgery is getting worse. It seems bigger, and it drains constantly now. When she stood for PT, it just soaked the dressing and ran down her leg. We really need them to do something about it. The tape from a dressing change every couple of hours, and the constant dampness is wreaking havoc on her skin, as well. 

She isn’t necessarily battling the ICU delirium anymore, but I think the effect of it. She had some crazy dreams that messed with her and scared her in the crazy ICU days. Some of the reasons she doesn’t want to watch anything far out there are to keep from having crazy dreams, she said. There was a word that she couldn’t figure out the other day. She still doesn’t have her phone, so she asked to look at mine. I made sure she wasn’t going to get on social media or anything; there’s enough there to make you have nightmares without ICU delirium haunting you! She just searched for the word and was done when she found it. It was nolo contendere. Maybe she was dreaming of riding with me, I’ve pleaded that a good many times for traffic violations! 

We had a couple of nurse residents who were training come in; they were kids. Both Amanda and I had to instruct them on a few things! They were just there to give her a bath and change linens. She’d already given herself a bath with a wipe as she stood at the sink. So, she didn’t need that, but they made the bed. I had to tell them which way the pad that goes under to be able to lift patients up in bed went, and Amanda had to tell them to flatten the bed out to put the fitted sheet on right. The top sheet and blanket were pretty much thrown on there! 

I’m cracking the whip on Amanda PT-wise, getting her to stand, brush her teeth, and wash her face. She stood for about 15 minutes on Tuesday, too. PT came and got her up and walking later on in the afternoon. I think they took it easy on her. It’s hard having different therapists; they really don’t know what she can do from one to the other. I would have pushed her a little harder; she is getting better with each activity.

It’s getting real. I put in a change of address with the post office to forward our mail here to Nashville. I know I’m staying till the end of September for sure. So it was the best thing to do. I walked down to do that and stopped on the way back at a Hopdoddy for a chat with someone I knew who was working. It’s been good for me to have people outside the hospital that I know and can talk to. If they know me at all, they ask about Amanda every time I walk in. I’m getting to know many of my name and getting in on the workplace drama! Being from the restaurant and bar industry, I relate easily to them. I know the lifestyle for sure.

The cath for the filter was pushed for Amanda to go back to a specific doctor, the cardiologist wanted to place it. Access is a big problem. They are going to go through her left groin where a stent is, since the wound is on her right side, and because she had blood clots in her subclavian, upper chest, they didn’t want to disturb. It was late before they got her 9 pm meds, and by the time she got them down and I got her in bed, it was 11 before I even left the hospital. The 6 am alarm came early this morning, too. It’s still better than sleeping in a hospital pull-out chair, though!

As I left for the hospital, I was headed for Chick-fil-A to get Amanda breakfast and a fruit and yogurt to take with her later morning meds. Then I realized she was NPO. I almost botched that and brought food when she couldn’t eat! She needed to get up to the potty when I got there, so I had to put my nurse hat on real quick. I changed that to the PT hat when I made her stand at the sink for a while after that. She still stood for about 15 minutes. I also had her walking around the room a bit afterwards. I’m telling you, if PT isn’t going to whip her into shape, I am!

Yesterday was the first day she’d seen herself. I knew it was coming; it was just a little more delayed than I’d expected, the dreaded moon face. It’s a product of the steroids and was expedited with the crazy high IV doses given after the 2R rejection came back. It’s bad, too; her face is so round and puffy. I needed a password off her phone the other day, and her phone didn’t even recognize her. It was pretty demoralizing last time. Especially after she’d lost all the weight and was super thin before the first transplant. We know it will go away when she is finally weaned off the steroids, so it’s not as scary this go around. Either way, it must have been crazy for her to see herself for the first time like that. I was a little worried about the fallout, but she took it well.

A surgery fellow had come by on Tuesday and mentioned they may need to do a surgery to fix the wound. They were thinking it was damage to the lymphatic drainage, but wanted to wait and see. The cardiologist was thinking it could be just excess fluid finding the easiest exit. She was about 10 pounds heavier than last week and looks puffy from fluid retention. The drainage has gotten worse. When wound care finally showed up, after the fluid was cleared from the hole, you could watch it fill back up. Because of that quickness in the fluid coming out, they were pretty sure it was damage to the lymphatic system and would just take time. They ordered a different dressing setup without tape and a panty-type thing to hold it all in place, and some type of medication to help absorb things. 

Our first visitor in the step-down unit was BODD, pronounced Boddie, aka Big Old Dumb Dog. Kids named her because of the way she smiles when she runs! Her dad, who brought her to the unit to make visits, was a heart and liver transplant patient from Vandy. He made it seem that the number of those getting hearts and livers was small. Also mentioning he had a low chance of survival and thought the world of the Vanderbilt transplant team. This was a nice pick-me-up for Amanda. 

We also had a visit from our outpatient coordinator, Adrain. She gave us the full rundown and went over everything well. We’d done a similar thing for the first, but it was with the inpatient coordinator. They were really involved in the process there, and we have yet to see an inpatient coordinator here. It’s just different programs with different ways. I like this rundown better here, and especially that it was with the coordinator we’ll have from here on out. She will be the only constant face we see; the rest of the team will rotate. Clinic visits are handled mainly by NP/PAs, too. The docs are mostly reserved for issues. If that’s the case, I hope we get out of her and never see the cardiologist again, issue-free!  Amanda is a unicorn with one-of-a-kind issues, though, so I’m not holding my breath! It was good to meet with her and put a face to a name early on, before we were discharged. She is going to get me added to Amanda’s MyChart as a provider, so I can communicate with her and the team as needed, too. 

IR was the next to come by. They will be placing a tunneled dialysis catheter on tomorrow. It will go in a vein in her neck but go under the skin and exit through her chest. This is more of a long-term solution, and she will go home with it. Seems the dialysis will continue after we are discharged. The problem was that the procedure required her to lie flat. So we’re going over the ways they could sedate her, from nothing and just a local and some regular pain meds to full general if needed. We didn’t want either and settled on the conscious sedation of the cath lab. They could set her up a good bit more than the filter placement going through her leg. So, I was thinking it would be as much of an issue. They wanted to see how she tolerated the cath with filter placement and go from there.

We also went for a walk in the afternoon. She made it as far as she’s walked yet. I wasn’t too hard on her, but I didn’t ask if she wanted to sit either! She took a few standing breaks and made it over 200 feet. The care partner followed with a chair in case, but she never needed it. PT hasn’t used a gait belt surprisingly, but about halfway around, I grabbed a big handful of her gown in case I needed to control a quick sit for a fall. She did great, though. The coordinator mentioned an inpatient rehab facility. Amanda doesn’t want to do that, so I joked that she was pushing it to stay out of that, and she agreed! If we are talking about discharge next week, I’d prefer her to go to the rehab. The sooner she’s out, the more that’s on my plate, and I don’t want to take her in this state right now. She needs to be a little more advanced before we go home. I hope I don’t have to go against her wishes, but I will if I’m not comfortable with her going home. I don’t want a fall and a setback.

In Vandy cath lab fashion, she wasn’t taken back for her 2:30 filter placement until 5:30. We’re getting to know the cath lab nurses well. I was joking with the seasoned one when he walked in. I beat him to the punch and saluted him before he got to it, as he usually does. He’s always a cut-up and a fun one to pick on. I’d been NPO along with Amanda, so I left to get something to eat. I hadn’t had the burger of the month at Hop, so I gave it a shot. It was busy, but I got to chat with the bartender a bit. She was sweet and had heard from another that Amanda was out of the ICU and was happy for us.

It was a quick procedure. I wasn’t gone too long, but I did wait a few minutes to get an Uber down since it was raining. I’m not sure if we even own an umbrella, plus I was rocking the lion’s mane hair and didn’t want to get it soaked! By the time I got back, Amanda was already back. I could tell they gave her a good dose of the meds. She also got a Valium to calm her before the procedure. She was lights out when I got back—not complaining when I woke her up to ask about it. It seemed my hounding them about giving her someone for anxiety before and making her know to give her the top shelf sedation and not the well stuff paid off. I had been hammering them about it, too. Seemed my message even trickled down to the nurses. When I mentioned it to them as they wheeled her off, the seasoned one told me Oh, we heard! Dialysis is about to start even after 9, so it will be a late night for her. She was worried they were going to take her down for it, but with all that is going on, they will come to the room now.