February 22, 2022

It’s hard to remember that we had so much time in Select. It feels as if we were only there for a couple of days; a week, tops. We were there for… thirteen days? I felt so out of control for all of it. I mean, I had previously felt not in control, but at least as if I was making a difference. Helping. Advocating for him. But not after this. After this day, I just felt as if I was the one spinning out of control, unable to stop what was happening.

Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead, release your fears
Stand up and be counted
Don’t be ashamed to cry

Yesterday turned into kind of a day of mixed messages, and even though I was told while I was there that moving to Select was now off the table because of his gastric issues, they went ahead and cleared him for Select, and moved him there last night. I did get multiple phone calls about it, and made sure that this is the correct action, what with his gastric issues, and it seems to be, so… here we are. And can I just say, this is the Shands I was expecting two months ago, hahaha? I fully believe this floor is haunted by the ghost of Nurse Ratchet.

You gotta be
You gotta be bad, you gotta be bold, you gotta be wiser
You gotta be hard, you gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm, you gotta stay together
All I know, all I know, love will save the day

Anyway.

So far the only person I’ve talked to besides the check-in desk is the wound care guy, who comes around once a week and checks skin. This place seems a lot busier, a lot more chaotic – but also, we’re at the far end of one hallway and we have a big wooden door that shuts, no windows in it, so I can’t hear a single thing outside of our room. So on one hand it feels like we’re in some sort of surreal mental ward and on another hand it feels like we are alllllllll alone. I only say “surreal mental ward” because this place was… I don’t know, it kind of feels like the Fight Club of hospital wards? The first parking lot I pulled into, the guy had vaguely heard of Select and told me I was welcome to park here but it was a long walk and I could go park somewhere else, the next place I pulled in wasn’t actually a parking lot, the next place I pulled in I had to almost wake the guard up to make sure I was parking in the right place and he didn’t really know but thought I was in the right place. So I parked (eventually… getting one of the last parking spaces available, and what happens if there’s nothing left? Do I have to pay the $10 parking fee because I couldn’t get my parking validated because I couldn’t go inside?) and walked quite a ways… I full expect to get lost coming back out to my car. Shit, I fully expect to get lost trying to find the door from the elevator!

Herald what your mother said
Read the books your father read
Try to solve the puzzles in your own sweet time
Some may have more cash than you
Others take a different view
My oh my, eh, eh, eh

This place isn’t nearly as visitor-friendly as Shands proper. One chair. No table. No eating and drinking (?!?) in the patient’s room (I will definitely be getting my steps in, walking to the other side of the fucking ward to the saddest family room I’ve ever seen, in order to take a sip of water and then go back to Tim’s room).

And unfortunately, I don’t really know anything else. I haven’t seen the nurse yet, so I don’t know how he’s doing other than them calling me at about midnight last night because he was too confused to tell them if he had a DNR or not (that was only for the check-in paperwork, he did not need any emergency care last night — I made sure to ask about six times since the phone woke me up; I didn’t want to get anything wrong!).

That’s about it for right now. I’m thirsty and I need a granola bar so I’m going to go find this mythical room I can take two bites of something in. I feel like I’m going to be spending a lot of time in Tim’s bathroom, eating a cracker or taking one sip of water. Good lord.

(Pause for intermission while I go find the family room)

That was probably the worst phone call. The intake nurse was so casual when she called, so cheery, but was asking me if my husband had a DNR. The hospital calling at midnight to ask if your husband wants to be resuscitated or not is … not the phone call you want. Even when it’s just for intake paperwork. Why wasn’t paperwork done when he came in? Why didn’t they call me with questions then, if he couldn’t answer? Why didn’t they call me to come in and fill it out, the minute they figured out he couldn’t answer? This place was absolute clown shoes.

You gotta be bad, you gotta be bold, you gotta be wiser
You gotta be hard, you gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm, you gotta stay together
All I know, all I know, love will save the day

OK. I have eaten my granola bar and had some water, so I’m mildly less pissy now. Mildly. I did remember that the skin care guy said that Tim had already been up in the chair for two hours today, before I got here – that might be why he’s so tired right now. It must be a sort of… communal chair, though, that travels from room to room, because he doesn’t have a patient chair here with him. And if they were sitting him in this chair I’m sitting in now? Good lord. That would have been uncomfortable for him.

So……. I don’t really know what else to say. This is going to be a different kind of adjustment than I was thinking. I do kind of feel cut off from the rest of the floor, what with the door shut. I tried to open it though and it just swung shut again – it doesn’t seem to want to stay propped open. I don’t know how long during the day I’ll stay, want to stay, be able to stay???? Visiting hours are from 10 – 8, I prefer mornings, but… what kind of therapy schedule are we going to be on here? According to the website I’m not allowed to participate in the therapies, which, uh, if you’re getting good care, awesome, I don’t need to be here. But I’m also his partner/advocate/extreme warrior goddess so if he’s NOT getting good care? You’d best bet on me sticking around at all times to rain down some fire.

OMG, that fuckin’ door. That fuckin’ room. That whole fuckin’ FLOOR. OK, so I found out later that he was in an isolation room. Not because he was that kind of sick, but because it had been the only room open when he got there. That’s why the door wouldn’t stay open. It was designed to stay shut That’s why there wasn’t a window. No chance of fresh air. Isolation. Boy howdy, I sure felt isolated.

Time asks no questions, it goes on without you
Leaving you behind if you can’t stand the pace
The world keeps on spinning
Can’t stop it if you tried to
The best part is danger staring you in the face, oh

OK, the nurse just came in to give meds, and she seems a lot like the nurses over across the street. And she, uh, propped the door open by… well, I’ll just try to share a photo of it. Apparently we’re in an “isolation” room, one that is used for patients that need to be isolated, but he doesn’t need to be isolated, so it’s ok to tie some tubing together and wrap it around the door handle to keep the door open.

I mean… on one hand, necessity being the mother of invention and all, that’s a great way to troubleshoot a problem. But maybe if you have to have a fix for a problem like this, maybe… I don’t know, request that the door not be that way? How often do you have to use it for isolation? Is it worth it? Gah. Whatever, I don’t care, not my problem, whatever… it’s just… this was a symbol for every single thing about Select. Nothing there was quite … functional.

Sweet Zombie Jesus, this is… an experience. Not just today, the whole thing. I genuinely feel like I’m in a Twilight Zone episode.

In other news….? There is no other news. This is my life now. Waiting to talk to nurses as I watch Tim sleep through whatever channel he happened to be able to figure out how to land on, and sending increasingly irritated emails to the HR department at his job so we can continue to get health care and maybe part of a paycheck so we can afford to keep having this fucktastic vacation.

It’s a good thing there’s no drinking of any type allowed in this room because I could definitely see myself switching water out for rum and fruit juice.

Shit, I shouldn’t have said anything about drinking, now I’m thirsty, but I’m too lazy to walk three minutes away to be allowed to take a sip of water. I wonder if there’s a camera in the bathroom?

I did wind up putting my water bottle in the bathroom when I would get there, and then just go in and take a drink every time I was thirsty. Which means it looked like I had to pee or something about every twelve minutes. Whatever. I’ve got one kidney – I’ve been training myself since finding that out to always have water on me. To never let myself get to the point where I’m thirsty. So to be told no water? By a bunch of people who clearly hated their jobs and didn’t like where they were? No thank you.

I tell ya, Shands ICU vs Select was night and day. Everybody in the ICU helped each other, everyone looked out for each other. Everyone checked in on each other and asked each other if they needed any help, if everything was OK. The only time I saw a nurse in Select poke their head in to check with whoever our nurse was, it was to ask if they were done with a piece of equipment and could they have it.

Remember, listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
My oh my, eh, eh, eh

You gotta be bad, you gotta be bold, you gotta be wiser
You gotta be hard, you gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm, you gotta stay together
All I know, all I know, love will save the day

Lyrics by Ingram / Weekes
You Gotta Be