February 25, 2022

Ah… this is the day that I went in, emotional guns blazing, starting my campaign to get him moved back to ICU. Not that THAT did any good. But I tried.

And here is where, though, I ask myself… did I try enough? I mean, I know I did everything I could do at the time. I gave everything I had and I did the best for Tim that I could. But I will always second-guess myself. I will always wonder if there was anything I could have heard, said, talked to someone about, anything… anything that I could have had a hand with, in turning the tide. I know there wasn’t. But what if there was?

People can contain multitudes. It’s possible to feel more than one thing at the same time, about a thing. I can feel like I did enough. But I can also feel as if maybe there was something I didn’t see, that I could have used to do more. I know I did enough. But did I? I know I did the best I could for him. But did I? I did everything I could. But did I? Movies, books, TV shows, they all teach us that there’s always a last-minute save. I didn’t get that last-minute save for him. So what did I do wrong? Nothing; that last-minute save is a trope, not reality.

Summer’s end is around the bend just flying
The swimming suits are on the line just drying
I’ll meet you there per our conversation
I hope I didn’t ruin your whole vacation

My inner Dragon Lady is coming out, and this morning I’ve started lobbying to get Tim moved back to ICU across the street. It’s not that this place sucks… okay, I mean, it kind of does, in an “all the equipment is old and all of the employees are deflated and sad” kind of way — most of the staff seem competent but I’m getting furious that they also all seem overworked and tired and completely out of compassion for the patients.

Ooo, except for today’s nurse, Emmanuel, who I just told that I want him to just be Tim’s personal nurse from now on, can he please just move in with us?!

Anyway. So I had a long talk with Emmanuel, who spent five years working on the Neuro ICU unit of a hospital he’d worked in for 12 years, in Puerto Rico, and he agreed (in fact, volunteered) that Tim really wasn’t ready to move over here. So when the doctor just stuck his head in, I talked to him about what can we do to get Tim back over to ICU. He says that right now, Tim is too stable to move to ICU although he 100% understands my concerns and has seen himself that Tim is backsliding since he got here. Unfortunately Tim is holding his own on most of his numbers, and his breathing (even though he’s on the vent again) isn’t supported enough to qualify for ICU, and he’s holding his own blood pressure steady (in spite of the afib) and he’d have to decompensate enough to be put on blood pressure medication before they’d be able to move him back to ICU.

However, the doctor absolutely sees my concerns, and there’s a Critical Care Doctor above this doctor who makes the calls, and he says that he has already spoken to that doctor, who is following Tim’s numbers. He said it doesn’t happen often but that doctor does have the authority to move Tim back if it comes to that, that it’s not unheard of and there is an easy process for it so if it needs to happen, it can, and I don’t need to worry about it.

Well you never know how far from home you’re feeling
Until you watch the shadows cross the ceiling
Well I don’t know but I can see it snowing
In your car the windows are wide open

Come on home
Come on home
No you don’t have to be alone
Just come on home

So how is Tim? Sleeping. Hot and once again running a fever, and they’ve taken samples of every bodily fluid to test for infection. In talking with Emmanuel, though, who used to work on a stroke ward? He asked me where in the brain most of Tim’s strokes were, and when I said back left and front right, he nodded and said that the ability for the body to control it’s temperature is located in the back left, so he’s seen a lot of stroke patients who get either really hot or really cold just becasue of that. It has nothing to do with infection or being sick, it’s just the brain not being able to regulate body temp.

Nope, I lied, Tim’s not sleeping – he just started getting really agitated. His temp is up to 101.3, and he’s trying to get out of bed. He is restrained, but in these weird mitten things, not in the cuffs. And they don’t have them tied to the bed, so he’s able to flail around a lot. I’m going to stop trying to write notes now, and see if I can help at all. More later.

Tim’s numbers were all over the place. Temperature. Heart rate. Everything. Just like back in the ICU, it seemed like everything was wrong with him. And yet, they couldn’t pinpoint what was wrong with him. Everything? But what’s causing it? They can’t fix it if they don’t know where it’s coming from. His whole body was going crazy. How is it they can’t find a reason? Because everything is out of whack, so they can’t narrow it down. What a fucking mess.

And, later, he’s calmed down a lot; they increased his O2 on the vent, tied the restraints, gave him a light sedation, and also packed some ice packs around him (his fever spiked at 102.9).

In spite of all that, I’m feeling a lot better than I felt yesterday. I feel like I have an end goal, which is to get him the fuck out of Select – whether that’s better and to UF Health Rehab, or worse and back to ICU? At this point I’d take either; I’d prefer better, but I’d take worse if worse means that we can fix some shit.

Also, I’ve heard that he has been approved for Short Term Disability, retroactively through December 24th. I spoke with the claims agent yesterday, and y’all, I don’t want to give you her real name but I will because it’s a fucking character in a bad movie — Aurelia Bighair. I KNOW. I’ll just sit here for a second while that sinks in. If you are thinking that I want to know absolutley everything about this woman, you’d be right. I have GOT to know her story. Bighair???? I was afraid to pronounce it on the phone in case it was, like, French or something, maybe pronounced Beeej-AYA or something? No. It is pronounced exactly as it’s written. All I could think of was this line from Dead Like Me, when the woman introduces herself “Delores Herbig, as in Her Big Brown Eyes.” I’ll wait while you stop giggling. ANYWAY. So he’s been approved, I had to copy and email them the POA that I have, but that’s all they need (allegedly) and as soon as those PDFs get processed, they’ll send me monies. Aurelia says that Short Term is good for three months from the date of start, which honestly if you had told me on December 24th that we’d be in this for three months I would have cried. Now I’m just like, three months is nothing, how has it not already been six months?! And the “good” news about Short Term disability is that if I don’t tell them by March 24th that Tim is better and back to work, she will automatically take care of shuffling everything over to Long Term Disability, and if there’s anything she needs from me at that point she will contact me but most likely there’s nothing I’ll need to do, it’ll all just happen.

OK, real quick about valet parking before I have to walk all the way down to the family room so that I can have some water to wash down the Tylenol I need for the headache I got just being here. So, this is Old Shands, if you’re from Gainesville. You’ll recognize this u-shaped drive as the former ER drop-off. Right now it’s patient drop-off/pickup for the North Tower, and also valet parking for the North Tower. So there are really supposed to be two lanes of traffic here, although pulling in, it feels like a damn free-for-all. You get past that first curve in and they have it divided – valet to the right, drop-off to the left. I noticed yesterday that about half of the drop-off drivers are food service, dropping off meals to people in scrubs who look very irritated and hungry.

Valentines break hearts and minds at random
That ol’ Easter egg ain’t got a leg to stand on
Well I can see that you can’t win for trying
And New Year’s Eve is bound to leave you crying

Come on home
Come on home
No you don’t have to be alone
Just come on home

So whether you’re dropping someone off for an appointment, trying to valet park, trying to pick someone up, or trying to drop of food, you have to pull into this one entrance which has a curve almost immediately, and is slightly wider than one car. Definitely not a two-car entrance, although it becomes two lanes after the curve. It’s pretty cutthroat to get in there at first; yesterday I sat at the edge of the curve for two turns of the light I was at, waiting to get in, people in back of me either hating me or hating traffic or were themselves resigned to waiting as well. The big truck there off to my left turned in from oncoming traffic, and just sat there, blocking the light, for a full turn. I mean, I get it, she was probably tired of people like me turning right to get in there when she had to wait for the light to turn at a time there was also space.

And while everything is marked, it’s not marked very brightly or with signs that are easy to see and read (very small print, white letters on dark blue background, and arrows that are not close to the words telling you where to go)… so if it’s your first time pulling into that, and you’re at all already stressed out, it can turn into Thunderdome pretty quicklike. As I was getting out of my car yesterday, a woman who had driven in the left-hand lane (for drop-off) shouted out to the guy taking my car, “is this not valet? Where is valet?” and he said “I’m sorry, you have to go all the way around and come back in on the right-hand side” and she shouted back “THIS IS BULLSHIT!” and peeled off. I mean, she’s not wrong, yeah? But the guy turned bright red and I just shook my head and said I was so sorry this was how his morning was starting. And that I thought he was doing a kick-ass job in what really looked like a stressful morning, and that I hoped he had a really good day. He looked like he wanted to cry.

Then when coming out to get my car, it took… twenty minutes? I mean, whatever, I don’t care, I’m not in a hurry. And I got to people-watch, which, at Old School Shands, is … well, pretty much exactly what you’d think. For example…..? A couple drove up in what I’d call a Terminator (a car missing most of the front panels), he was driving and smoking, she was sleeping (or at least had eyes closed) in the passenger seat. All windows down. You’d think this would be a drop-off, right? That he’d be dropping her off? Nope. He got out and without even saying anything to her, walked into the hospital, dropping his cigarette on the ground as he did. At least he stepped on it to put it out? She got out, and was limping, keeping one hand on the car at all times, and worked her way around the car to the driver’s side, got in, and drove off. WHAT ON EARTH IS THIER STORY?????!!!!!?!!?

OK. It’s been about an hour since I bugged anyone to get Tim moved back to ICU, so I’m going to walk around and see who’s chain I can yank. xoxo, y’all. As Brené Brown says at the end of her podcast, stay awkward, brave, and kind.

I wish… well, I wish a lot of things. I wish I knew what Tim had been thinking and feeling. I wish none of that had happened to Tim in the first place. I wish I hadn’t had to carry the weight I did. I wish that it wasn’t during the time of Covid, and I could have reached out to more people for help without fear of bringing them anything horrible from the hospital. I wish nobody had to go through this. I wish that if, when people DO go through it, they would remember how hard it was and treat others with compassion and empathy.

I wish so many things.

The moon and stars hang out in bars just talking
I still love that picture of us walking
Just like that ol’ house we thought was haunted
Summer’s end came faster than we wanted

Come on home
Come on home
No you don’t have to be alone
Come on home
Come on home
No you don’t have to be alone
Just come on home

Lyrics by John Prine
Summer’s End