January 14, 2022

January Fourteenth… or, what a few of us took to calling “ECMO Day.” In all of the bad days we’d had so far, even days that I’d previously said “this is the worst”… this was the worst. It started off with a couple of phone calls from the hospital* that resulted in Linda and I deciding to stay home and rest ourselves that day. I spent the morning putting together this wonderful birdfeeder pole that a friend had recently sent me. But then, we got another call from the hospital.

Linda was out taking a walk when they called, and I’m so glad, because it gave me a second to compose myself. I didn’t really know the terms they were using, and I wanted to Google them, but also, I wanted to text a doctor friend of mine who had been being so lovely and patient with explaining things to me, and ask her advice. They had told me on the phone I didn’t have to come in, that it was up to me, but… I don’t know, there was just something about her voice on the other end of the phone? So I texted my friend, and after a bit of clarification back and forth she said that if it was her, she’d be the fuck over there.

Now I can’t really remember what order the next couple of things happened, but I either called or texted Denise and Tarrant and asked if one of them could drive us in (they both did, so that one could take one of us in their car and one could go in our car, and that way Linda and I would have something to drive home with). Linda came back from her walk, and I told her what was happening. She asked me what I wanted to do and I broke down and said I didn’t know, that I was trying to be strong for her so that she didn’t worry about her son, but that I was just so tired. I took a shower and cried a lot in it. Then Denise and Tarrant were there to pick us up. And like on the 24th, I pretty much cried all the drive in, saying that it’s not like I wanted him to die, but it might be easier for him if he did, because my god, how was he going to come back from this when his body had already been through so much in only two weeks? But also, selfishly, what would happen to me if he died? What would happen to our life together if he didn’t? What sort of sweeping changes would we be faced with? This was all…. getting to be a bit much.

* after all this was over, I wound up having to change the ring tone on my phone. By the end of January, I was already starting to have a small panic attack every time it rang. By March, they were pretty full-blown and I’d just start crying whenever the phone rang, no matter who the screen told me it was. It’s too bad because I liked that ring tone, but… it is what it is.

7:15 AM

Tim is OK, let me start with that. Having said that, who needs coffee when you can have a telephone call from the doctor at 7:15 in the morning??? As soon as my soul gets back in my body, I’ll be able to explain what’s going on with Tim.

OK, so, yesterday, he was coughing a lot, and that coughing led to almost barfing (hence my post about my sympathy barf response and making a joke about how I’m glad Linda was still here because pretty much any other body thing I am fine with, but you barf, and Imma clear the room like an Olympic track star). Also yesterday, and I’m sorry, Tim, I know you don’t like talking about your poops, but they were trying a LOT to get him to move something out. However, because of the coughing, the retching, and the fact that his bowls were already pretty full of bowel stuff, well, now they’re full of air, too, and the air is stopping the poop from moving (side note, this happened to one of our cats a couple of months ago, and she passed out from the pain – a horrifying thing to see your cat do, let me tell you. So, Tim’s a trooper, is what I’m saying). I think this is called an Illius but I’m probably not spelling that right.

So his doctor called me this morning to say that his O2 levels were really up and down over the night (they have been during the day, too, depending on what flow they have him on – it’s been between 89-91 on no air, and they want it at 92 or above, so they’ve had him on a high flow which brings him up to 96 but he’s also really fighting it, another reason I think why his belly is full of air). They decided to put him back on a bit of sedation (they’d taken him completely off of sedation), they’re putting a larger feeding tube in, and they are most likely going to put him back on the breathing machine as well.

The important thing here is that the doctor said this is not unheard of; it’s not an emergency oh-my-god Tim-only thing, this does happen a lot. Not all the time, not to everyone, but it is an expected thing and they know what to do to get the air and the poop on up out of there (side note: Linda and I may be more glad of our masks than usual today). Mostly, the doctor said, she knows that we come in to see him every day, she knows what time we get there, and she wanted to call me to let me know about this in case she was already doing rounds when we got there and would be unable to break away and let us know that everything is OK.

OK, back to your regularly schedule coffee and natural no-fright wakeup routine.

7:45

Aaaaaaaand, another doctor just called me to make sure someone had called me (I kind of love this hospital even though my hands are shaking like I’ve just electrocuted myself or something). She added (and I kind of love that most of his doctors are women) that when they were intubating him, he threw up, and aspirated some of what he threw up, so in addition to everything else, they’re going in with a … hold on … Bronhcial …. bronchosope?

From Doctor Google: Bronchoscopy is a procedure to look directly at the airways in the lungs using a thin, lighted tube (bronchoscope). The bronchoscope is put in the nose or mouth. It is moved down the throat and windpipe (trachea), and into the airways.

So they’re going to do that today as well, and then up his already sky-high levels of antibiotics to ward off any kind of infection from that.

Because both of them said that he’s going to be sedated again, and there are going to be people in and out of his room all day (they’re not taking him anywhere for the procedures, they’re doing them in-room), Linda and I have made the (difficult? guilt-inducing?) choice to take today off, to putter around the house and studio and take care of ourselves and rest today, rather than go in and see him. Of course I feel like I should be there every minute of every day and never leave or eat or sleep (or poop), but I’m also starting to fray around the edges. If there’s a day that I could reasonably not go in, a day where he’s sedated and being checked on about every 15 minutes is probably the day to do it. I’m going to feel like an asshole all day, mind you, but I’ll probably also be refocused and much better tomorrow for it. By tomorrow, also he should be off the breathing tube – they said he’d only need to be on it for about 24 hours.

So. There we are? Happy… Day that ends in “y”, I don’t know what today is.

Hold on, hold on to yourself
For this is gonna hurt like hell

2:45

So. Things are… not great, and Tim has a bit of a tougher fight on his hands.

The hospital had called this morning to say that he wasn’t doing great, but that they had it under control, and Linda and I decided to stay home today, to rest up ourselves, but Tim had other plans for us. They called us back a little after noon; they were worried about how he was doing, they wanted my permission to put him on what is called VV ECMO.

From Doctor Google: In veno-venous extracorporeal membrane oxygenation, blood is pumped outside of your body to a heart (VA) or lung (VV) machine that removes carbon dioxide and sends oxygen-filled blood back to tissues in the body.

In this, the VV, the heart is still doing all the heart-work on its own, this is just helping the lungs get rid of carbon dioxide.

ECMO is, for lack of a better way to explain it, what those of us who don’t work in hospital settings think of as “life support” when we hear “they’re on life support.” ECMO doesn’t fix a thing, ECMO takes the stress of what isn’t working, off your body and takes care of it, while health care staff can work to take care of other, life-threatening things… like in Tim’s case, pneumonia and sepsis. Ideally someone can be on ECMO for anywhere from a few hours to a couple of days. Tim was on it for… I think ten days. Might have been eleven.

Hold on, hold on to yourself
You know that only time will tell
What is it in me that refuses to believe
This isn’t easier than the real thing

HOWEVER! As we were driving to the hospital, they called again, and said that they did NOT have to put him on ECMO after all. What they’ve done is sedated him heavily, given him a paralytic similar to what he had during surgery, put him back on the breathing tube (ventalator) and pumped that baby up to 100. This has helped him, his numbers are looking better, and they did not have to put him on the ECMO because of this. (Why did I even tell you about the ECMO, then? Because I’m desperately trying to keep all of this straight in my head for later, so if I write it down, I can come back to it.)

Why all this drama? Well, in addition to the coughing earlier this morning when he aspirated some goo, when they were intubating him this morning, he started to cough and throw up again, and he aspirated more of the sludge he was coughing up. They have done the Broncho, and scooped a bunch out, but as I think I said earlier, they’re worried about infection. They’re also worried that he might already have some sort of bowel/stomach issue; when they put the NG tube back in, they got almost a liter of sludge right away, it’s still coming out, and his stomach is still distended. So they want to get him a CT, to see what’s happening in the bowels and stomach, and also to double-check what’s going on in the lungs.

That’s where we are right now. There’s a little more to think about in the coming days, as he’s on the ventilator and it’s going to be tough to wean him off that a second time; we’re probably looking at a tracheotomy that will be easier to wean him off of over time. The doctor explaining it to me, it sounded not terrible, but kind of long-term, as in a few months with it. She talked about how over time, with it, they can get it down to where it has the breathing thing and also a voice box – I haven’t read up on any of that yet becasue honestly so much is happening right now, this moment, today, I’m not too concerned with what’s going to happen in a few weeks or months.

I know I’ve been saying this a lot, but I know this is a lot to digest. I am not gonna lie, I pretty much lost my mind after they called at about noon – gods and goddesses bless Denise and Tarrant for driving us in. But I feel better, being here. Seeing what’s going on is hard, but it’s not as hard as imagining it. And the doctors are so, so amazing at explaining everything that’s happening.

I don’t really know what else to say.

3:20

As I’m writing this, he’s stable enough that they’re taking him down for a CT. Yay! Another CT! We should have gotten him a card to punch every time he gets one. Get ten CTs get a free MRI? I think my friend Tarrant is right, I’m getting goofy from stress. (Side note, I told Tarrant on the drive in, because she and Denise drove Linda and I because I was a little on the upset side, but also need my car, so they drove us in — I rode with Tarrant and Denise drove my car with Linda as passenger — ANYWAY I told them that I want to have a baby this afternoon and name it after them. Tarrant was like, yeah, that’s a little extreme. I told them I’d name a couple of awesome kick-ass great characters after them, and call their ship “The Flamingo” and Tarrant was audibly rolling her eyes at me). Uh… and now I forget where I was even going with this. They’re taking him down for a CT, which means he’s stable enough to go (even though they packed something for every emergency they might have on the way down… they’re really much better prepared here than on ER) and we’ll know more after that.

Getting him ready for that CT scan was a PROCESS, y’all. Usually, what happens, is that they unhook you from everything they can, they detach the portable doodads from whatever they can’t unhook you from, put that portable somewhere on the bed with you, and then roll you down. Two people, one in front and one in back. WELL. There wasn’t really anything Tim *could* be unhooked from. So it took five or six of them to get him down. One in front, two at the foot, and another two or three to pull all the things he was attached to.

My love, you know that you’re my best friend
You know I’d do anything for you
My love, let nothing come between us
My love for you is strong and true

4:15

Tim is back from his CT, and the good news is there’s no bowel perforations. Of course, that means they don’t really know what they’re looking for, but at least they’re not looking for that. Another doctor suggested that perhaps, the infected emboli that had been going up into his brain and causing strokes (and by the way, they scanned his brain at the CT as well and said there have been NO new strokes, so that’s good) has gone into his bowel, and blocked something there. That his bowels are very dialted, they really don’t know why everything is backed up, but they’re determined to get to the bottom of this mystery, and fix it.

Am I in Heaven here or am I
At the crossroads I am standing
So now you’re sleeping peaceful
I lie awake and pray
You’ll be strong tomorrow and we’ll
See another day and we will praise it
And love the light that brings a smile
Across your face

6:00

Just a quick note to say his doctor came in to tell me that their plan for tonight is to hopefully do nothing; they’ve got him on a gazillion different drips, they want to keep him on the machines right now that are helping him, but the CT scan didn’t show anything that they have to rush right in and fix, so they’re hoping that the new antibiotics will keep working well on the infected (from the aspiration) lungs, and that the blood flow to the intestines will resume as he’s pumped full of fluids and kept stable.

I had originally discussed with Linda, before we left the house, about her staying with Tim overnight – I honestly didn’t know if I’d have the strength to, and I also had an obligation to all these animals that I didn’t want to saddle her with… but the longer we stayed that day, the more it felt more “right” for me to stay overnight. So we called Aunt Gay, who came to the hospital and picked Linda up downstairs, and Aunt Gay drove her back out to the property.

OK; I think that this, up until that last week in March, was the most things Tim was hooked up to.

Oh, God if you’re out there won’t you hear me
I know that we’ve never talked before
Oh, God the man I love is leaving
Won’t you take him when he comes to your door

7:15

So far they’re still talking about hoping to not do much this evening, and if they do make any changes, that those will be small ones geared to getting him on less machine oxygen. They are checking his blood gasses every two hours (next one at 9 PM) and so they’ll decide then if they can make any changes depending on how different that is from the 7 PM reading. Our new favorite nurse, Christopher, is staying until 11 pm instead of his shift change at 7, so it’ll be nice to have him for a couple more hours. He was with Tim for everything today, since he came in at 7 this morning, and he’s actually kind of glad they asked him to stay to cover part of a shift for someone because he already knows what’s going on with Tim. Right now he’s just sort of fussing over Tim, changing and cleaning IV things.

Am I in Heaven here or am I in hell
At the crossroads I am standing
So now you’re sleeping peaceful
I lie awake and pray
That you’ll be strong tomorrow and we’ll
See another day and we will praise it
And love the light that brings a smile
Across your face

9:15

Wow, the night shift is sooo much quieter than the day shift! I mean, I expected it to be a little quieter, but there’s not even really anyone bantering in the hallways, like during the day. Nothing much is happening, but that’s good. They were able to dial his oxygen down a titch, to about 80%; they did that about an hour ago and his numbers are still within range of what they want. Everyone is very happy with him being stable, so that keeps me happy. I may even ask Superhero Nurse Chris for a blanket soon, and take a little nap between blood draws.

Now you’re sleeping peaceful
I lie awake and pray
That you’ll be strong tomorrow and we’ll
See another day and we will praise it
And love the light that brings a smile
Across your face

And then, becasue I spent the night, here’s a little bit that I also put on Facebook the next morning when I was posting about what happened in the afternoon –

7:30 AM Saturday

Good morning and good news – their goal for Tim was that he not get any worse overnight, and he actually got a little better!!!
His O2 flow is down from 80% to 50%. They’ve taken him off some medicines, he’s keeping things at good levels on his own now. They’re talking about taking him off the paralytic over the next few hours if everything else continues to look good. They’re also thinking they might be able to wean him off either the ventilator or the NOxBox (“intelligent nitric oxide delivery system; Doctor Google says “Nitric oxide is a gas that is inhaled through the nose or mouth. It works by relaxing the smooth muscles to widen the blood vessels in the lungs.”).

And at about 4 this morning, a gaggle of nurses came in and changed his sheets, bathed him, and his temp was down.
And in news that’s good for everyone ELSE in the hospital, Jenn is on her way over with coffee for me, haha.
More later as the day progresses.

You know, Monday, surgery day, was a rough day. Tuesday was better. Wednesday was better than that. Thursday we kind of held steady; he was coughing a lot (boo) but he also stood and walked a few steps (yay!). Yesterday was rough. If today is better than yesterday, though, I’m still counting this week as ahead by one and a half good days.

Never give up! Never surrender!

Hold on, hold on to yourself
For this is gonna hurt like hell

Lyrics by Sarah McLachlan
Hold On