March 10(-11), 2022

A bad day. A long day. The last day. The first day of the rest of a life I wasn’t prepared for but must learn to navigate.

Was that a lot of things for him to be on? At this point, it just seemed… normal. Honestly I don’t even think I even noticed how many things he was on. I just took a picture because I’d been taking pictures of all the things he was on, so I just kept doing it. And y’all. The absurdity of the “Fall Risk” sign above his bed? As if he could swing his legs over, let alone try to stand up? Everything at this point, though, was darkly absurd. I mean, it just kept getting worse. I had to laugh because the alternative was an abyss of darkness and sobbing.

Come pleasure me again
I’m so tired of digging in
I’ve done my share I don’t need to win
Just let me go easy

Today Tim slept while I got to participate in rounds again, talked with the kidney/dialysis doctor, and talked with Infectious Disease (again).

ID didn’t say anything new – his white blood cell count is abnormally high, he’s running an intermittent fever, his blood isn’t growing anything yet. I wish I didn’t like that department so much. They’re so fun to talk with but they’ve helped exactly zero percent.

This is the bedside dialysis machine. It still freaked me out a little, even though I knew he wasn’t going to be ripping anything out. It was still kind of freaky to watch. Was it noisy? I don’t remember. There was so much noise, everywhere, all the time, anyway. I think there was a low thrum, like an old box fan. A low whirring beat in the background.

For two years my body fights
At this point it don’t seem right
Just to do it out of spite
And keep me hanging on

Oh you let me go easy
Won’t you let me go easy
You let me go right now

The Kidney Doc has put him on bedside dialysis; CRRT (from Doctor Google: CRRT is a slower type of dialysis that puts less stress on the heart. Instead of doing it over four hours, CRRT is done 24 hours a day to slowly and continuously cleans out waste products and fluid from the patient.). It’s got smaller tubes and runs slower, he can be taken off with no problem if they need to wheel him off for a CT, and be put back on it. In fact, they did, towards the end of the day; cycled the blood back in, set it to run distilled water while he was gone, and then hooked him back up after they got back from the CT.

I see the numbers dwindling
Of my enemies and my friends
Still I know it never ends
So I’m passing you this torch

The General Doctor said they’d taken blood yesterday for fungal cultures but it’s usually 24-48 hours before anything shows up. His current theory is that it might be Tim’s colon, but that’s it’s a broad range of things it could be with that, varying in fix-ness from a couple of weeks on medication to many many months of surgeries and uncomfortable recovery. The CT they did today was to focus on that area to see what they can find.

Side note that his death certificate did read, along with another couple of things, Colitis. From Doctor Google, I’ve been able to cobble together than Colitis is an inflammation of the colon (the large intestine). So, kind of the other end of the line from the duodenum, the area where he had the small stroke months previously. Colitis can be caused by what looks like about twenty different things, including CDiff, which he’d been being tested for and consistently come up negative, but also by infections caused by a parasite or a virus. Parasitic, viral, or bacterial colitis can be cured with antiobiotics, if you get the right ones and stay on them long enough. So if his colitis was caused by any of these, we didn’t find out in time. But with the pneumonia (and pneumothorax? possibly?) and septic shock causing acute hypoxic respiratory failure, fixing the colitis might not have changed the outcome, even if there was time. Gah. It’s such a mystery. And such a … you know, shows like ER and Gray’s Anatomy and House would have us believe that the right doctor coming in at the right time and hearing the right thing can turn into an AHA! moment that saves the day. But real life isn’t like that. Real life is full of answers that take time to figure out, answers that might take more than one person to come up with, and answers that may never even be revealed. Real life isn’t like TV. There’s not always a last minute, hail-Mary save for our hero. And it sucks. It sucks that it happens, it sucks that we expect doctors to be super-human… it all just… sucks.

Some other machines that were keeping Tim alive. One was a ventilator, I forget what the other was.

Fight the greed and the federals
Fight the need and the toxic spills
You drink from that wishing well
But may it never quench your thirst

In other news… I’m too tired to really explain. The Reader’s Digest Condensed Version is… my speedometer is not repaired yet, we’re going to try again next week, I didn’t get HaldeCraft orders out today because the mechanics had my car until a little after 5, but the tortoises and cats are all fed (as am I). Which reminds me — I asked Nurse Blanca today if it was OK for me to eat something really quickly, or did she need me to leave to do that, she stared at me wide-eyed, and was like, “Of course you can eat here! What did they DO to you over at Select?!” I responded “hopefully not anything that Tim will remember, and stuff I’ll be able to get over with therapy.”

xoxo

Here they were, taking Tim down for a CT scan. Five people, I think? To move him and all the stuff that had to go with him?

So. Here’s what I didn’t have time or bandwidth to talk about, about the rest of that day. I don’t know, actually, that I’ve ever written about his last night.

I was home, eating dinner, petting the cats, when the phone rang around 8 PM. It was the hospital. The doctor said that Tim wasn’t doing very well, had gone downhill, in fact, since I’d left three hours earlier, and… that it might be comforting for him, if I came back. I looked at the clock. It was a few minutes after 8. Visiting hours ended at 8. They wouldn’t have told me to come back if… if things were good. I can’t remember what order, but I texted Jenn and I texted Denise and Tarrant. Denise was going to come over and drive me in, and Jenn would meet me there. By the time I got there, Jenn had already arrived and gotten in Tim’s room – she was still on whatever paperwork there as my sister and one of the four people allowed in.

The rest of the night is like… cards, shuffled, and spread out on a table. I remember what happened, and a vague order, but more like… unconnected moments. I’ll try to weave them into a cohesive narrative.

I pulled up the sheet to look at Tim’s leg, and noticed that he’d already started to mottle. I immediately kicked myself for not checking that earlier in the day… if I had noticed it before I left, I wouldn’t have left. What is mottling? Mottling can start anywhere from a few hours to a few days before death. The skin, usually starting around the feet and hands and moving up, start taking on a marbled, mottled appearance. It can be any color from gray to red, but is usually purplish red. The doctor seemed surprised that I knew what that was, but also relieved, because knowing what that is means that it’s more likely I know what’s coming. Until then, she had seemed a little nervous with me. Nervous, maybe, that I was going to be an unhinged handful? Nervous that I was going to expect her to still be able to save him? I don’t know. But when I agreed that we were probably at the end of the journey, by hours or days, she seemed much more relaxed.

I asked about moving him, and she said that honestly, she didn’t think there was enough time to move him to Hospice. I texted Tim’s family to let them know what was happening. I didn’t want them to just… get a phone call, later, if he died that night. And I … I could tell it was time. He was already gone, I could feel it in the room. The machines that were keeping him alive were also torturing his body. We talked about what the doctor called “Comfort Care,” which is essentially Hospice, EOL (End of Life) care, but in the hospital. With our permission, they would take him off all the machines that were keeping him alive, but keep him on painkillers, until it was all over. If that’s what I wanted. I kept texting with Tim’s family. Yes, it was what I wanted, but I wanted them to know it was coming. I was hoping we’d all be on the same page. We were. They didn’t want him suffering any more than I did. I wished there was time for them to get here, but I didn’t think there would be. And I was right. The whole thing, after that (sorry if I’m getting ahead of my own story, here) took about three hours. The fact that his body went so quickly once off the machines…? That tells me he was ready to go. Not that he wanted to go, not that he was glad to go, I’m sure that was never in his mind – but his body just couldn’t do it any more. He was such a strong man, but that had all been ground out of him over the last three months. His body just didn’t have anything left to fight with.

Anyway. I knew visiting hours were over, but could my aunt and uncle come over, from the other side of town? Could we keep him on everything until they could get here, to say goodbye? They hadn’t seen him since this whole thing had started. I wanted them to be able to say goodbye. Yes, of course, of course they can come. I asked Jenn if she could call them; I didn’t trust my voice. After giving the phone back to me, Jenn went downstairs to wait for them and help them get up to where we were (the hallways and elevators can be confusing there).

Let me go easy
Oh you let me go easy
Won’t you let me go easy
You let me go right now
Let me go easy
Oh you let me go easy
Won’t you let me go easy
You let me go right now

The room, so tiny and stuffed full when he was in there with everything he was hooked up to, so empty when he was rolled out for his CT.

While Jenn was downstairs waiting for Aunt Gay and Uncle Joe, another doctor came in. He started hemming and hawing and going on a bit about how Tim wasn’t doing well (as if I didn’t know? I couldn’t tell?) and since he was taking forever to get to whatever point he had, I just looked at him and said, Look, I’ve already told the other doctor that as soon as my aunt and uncle get here, I’ll take him off all the machines, ok? So if that’s what you’re trying to talk or ask me about? It’s already decided. He looked sheepish, and left the room. I felt a little bad for being so short with him, but at the same time, dude. DUDE.

Jenn came up with Aunt Gay and Uncle Joe, and Uncle Joe came in the room first. I let him sit with Tim for a while, answering any questions he had but mostly just being there. He got up to go, to trade places with Aunt Gay, when Aunt Gay and Jenn came in – the nurse, Jallisa, had said it was OK under the circumstances for all of us to be in there. We found chairs for everyone else, and all four of us sat around Tim’s bed. Again, I answered any questions Aunt Gay had, let her have some time with Tim… not that he was responsive, or made any indication he knew she was there. And then we told the nurse it was time to take Tim off of everything keeping him alive.

I think it was… 11:30 or so by then. Maybe a little after midnight? Uncle Joe was looking tired, so after about an hour, I sent them home. Jenn opted to stay with me, for the duration. I had brought days worth of things with me – my laptop, snacks, pajamas, anything I thought I might need if I wound up having to stay for a couple of days.

I remember at one point, we were hungry… Nurse Jallisa brought us something. A fruit cup? Ice cream? I don’t even remember. But we sat there, Jenn and I, snacking and joking and occasionally falling silent, watching Tim breathe.

So when you get to Ladenville
Before the tears and the fare thee wells
For a moment stand real still
And you’ll feel me moving on

You go ahead with your plans
You won’t be seeing me again
But you’ll feel me in the hand
The hand that holds the plough

Occasionally I would get up and stroke Tim’s forehead, or arm. I told him what a good Tim he was. That it was OK to let go. I would be OK. We would all be OK. If he had to go, he had to go. That he didn’t have to fight to stay, if he had no more fight left in him. And again, that I knew, he was the best Tim he could be. That he couldn’t see my side sometimes? That I usually felt like I irritated him, and was a burden? None of that mattered. It didn’t matter at all. What mattered was that in life, he had been the best person he knew how to be, and that was OK. He had given, and loved, and helped people, the best that he could. That’s what matters. That’s all that matters.

It was over by about 2:30 AM.

Jenn drove me home; she asked if I wanted her to stay, in my guest room. Or maybe Duane had wanted her to stay, so that she wouldn’t be driving back that late at night. But she was wide awake to drive, and I was fine being alone. I’d been alone every night for the previous, what, 100 nights? And would be alone for the rest of them. So this night was just one of many.

I went to sleep, and that was that.

Let me go easy
Oh you let me go easy
Won’t you let me go easy
You let me go right now
Let me go easy
Oh you let me go easy
Won’t you let me go easy
Let me go right now

Lyrics by Amy Ray
Let Me Go Easy