January 5, 2022

Another big day, lots of things happening. I’m going to copy my Facebook post, which is almost like my notes to family, but I’ll intersperse with notes when they differ. And add some stuff at the end.

How many times do I have to try to tell you
That I’m sorry for the things I’ve done
But when I start to try to tell you
That’s when you have to tell me
Hey… this kind of trouble’s only just begun
I told myself too many times
Why don’t you ever learn to keep your big mouth shut
That’s why it hurts so bad to hear the words
That keep on falling from your mouth
Falling from your mouth

Big update coming, but no real hospital pictures… he hasn’t been able to work on the puzzle and the weather is dark and gray today so outside photos would just look sad. Have some cat pictures, instead?

OK! Let’s get started! Like Alexander Hamilton, it’s been NON STOP since Linda and I got here this morning!

Technically it started earlier, with a call from the hospital where the nurse calling me started the conversation with “EVERYTHING IS FINE” so bless his heart for that! He was calling to tell me that someone would be calling me to talk to me about getting Tim a heart catheterization this morning. It’s basically the same thing they did with his brain two days ago, but for the heart. Go in through the wrist, go to the heart, inject dye, see where it goes or doesn’t go. If they find a blockage, they have the ability to fix that right then and there, during the cath. But primarily this is to check to make sure he DOESN’T have any blockages, so that when they go in to do the valve replacement, they know a little bit more about what they don’t have to worry about.

Then, from my notes to family, a brief couple of lines –

So far they’re talking like the valve replacement might be tomorrow, but it also might be Friday. Why do I feel like they’re going to tell me about ten minutes before it happens???

It turned out that wouldn’t actually happen until Monday the 10th, but we didn’t find that out until later. And honestly, it did kind of feel like a ten-minutes-before-it-happens kind of thing.

Let’s see… what else? On Wednesdays, they check skin. Two nurses came in to examine every inch of Tim, to make sure he wasn’t developing any bed sores (none) or rashes (none) or any other random skin complications from laying about for ten days (none).

Another paragraph that I sent to family but didn’t post on Facebook; it may be a little difficult to read, and I don’t know if it makes it better or worse to tell you that this wasn’t even the worst thing that happened during this whole saga.

Here’s a part that may sound disturbing but I am fine with — they did have to restrain him. I had asked last night if they could, because as he was recovering from yesterday’s surgery, he was getting very agitated. He kept trying to pull of his leads, pull his blanket off, pull his gown off. I really had to wrestle with him for a bit, there, and at one point both Linda and I were holding onto the blanket at his shoulders to keep him from tearing his blanket off. Well, yesterday’s nurse kind of nodded when I asked for restraints, but I guess they didn’t put him in any, because this morning when Linda and I got here, we noticed he didn’t have his feeding tube in his nose any more. Not because he’s passed a swallow test, but because he pulled his whole dang feeding tube out during the night while he was agitated. So…. he won a pair of restraints for his trouble (and they’ll need to reinsert the feeding tube later today, if he doesn’t take and pass the swallow test).

Here are a few things about that. If you’ve never seen anyone in restraints in a hospital, it’s not as bad as it sounds. TV and movies make it seem like it’s the worst, but they’re actually very soft, tied securely but in a way that a nurse can pull in one place and they come loose in an emergency, and this is the big part – when done correctly, it’s NOT to make the patient less annoying to the nurse; it’s about keeping the patient safe. Restraints keep people from doing things like, oh, pulling out their own feeding tubes, which can be dangerous. Or pulling out IVs and bleeding to death. Restraints are helpful. Restraints are a safety measure.

Tim was in restraints almost constantly for the rest of the time he was in the hospital.

Is that everything? I feel like I’ve forgotten something. New nurse Abby has been in (I say “new” because we haven’t had her before, not because she’s fresh off the line or anything)… the two skin-checkers… another nurse came in to help Abby turn Tim… Augh, I feel like there was one other person but I can’t remember — possibly because I’ve also talked to two doctors on the phone this morning while I was in the room, and the nurse who called me at home. I don’t like it when things happen faster than I can write them down!

Oh! And I think I might have forgotten to say this yesterday — the surgeon said that for the first few days after the coiling surgery, there is a chance that we may see stroke-like symptoms. This is NOT a stroke, this is just that they had to burn out some diseased blood vessels, and it may take an unspecified amount of time as his brain learns to rewire itself. He said that he’s already seen this with Tim, that Tim’s brain already making new pathways from the damage from the strokes that he’s already had this week. So he’s very hopeful that Tim’s neurons and blood vessels won’t take very long at all to rewire/rework themselves in new, functional ways.

I may be mad
I may be blind
I may be viciously unkind
But I can still read what you’re thinking
And I’ve heard is said too many times
That you’d be better off
Besides…
Why can’t you see this boat is sinking
(This boat is sinking this boat is sinking)
Let’s go down to the water’s edge
And we can cast away those doubts
Some things are better left unsaid
But they still turn me inside out
Turning inside out, turning inside out
Tell me
Why…

OH BUT WAIT THERE’S MORE!!!

Someone just came in to talk about the surgery paperwork and explain procedures for the 6:30 a.m. tomorrow morning valve replacement (yay we finally have a time!) (if they can do the heart cath today, because they want to get that done before the valve replacement). Surgery can take 4-8 hours, and depending on how deep he goes under, up to another 4 for recovery. So don’t expect any updates for a while tomorrow, even though the surgery is at the butt crack of dawn.

What will recovery look like?

They’ll get him up for therapy the next day to walk around a bit. He will probably be in the hospital for another two weeks after the surgery, because of everything that he’s been through since he’s been here. Normally, she said, people can leave after this surgery in a few days, a week tops — but because of everything else (strokes, infection) they really want to keep him for a while to make sure he’s safe to leave.

Since he will have a broken chest bone, he will need help because he cannot push his body up. For 8 weeks he cannot lift anything above 10 lbs (y’all know that part is going to THRILL him). And it will be at least 4 weeks from surgery to drive because he must be able to independently walk to the car, get in and out of the car, and get about on his own. Until he can do that, no galivanting around town (I will be accepting gifts of chauffer hats in different colors).

So (sorry, got a little sidetracked there) … He will need inpatient rehab: two weeks in the hospital after surgery and possibly up to another four in a rehab facility. She recommends Shands for location/convenience, but says Brooks in Jax is very good, too. Because of my family and a support system here in G’ville, Shands Rehab makes more sense for us — I’m really hoping that they have a generous visitation policy at the rehab center, so that everyone who has said they’d like to see Tim, can get in to see him. But, we’ll see how that goes in a couple of weeks. Stupid Covid.

Whew. Yeah. Lots going on today, and tomorrow is going to be a long freakin’ day.

In other news, we were running a little late this morning because I got some HaldeCraft orders ready, and called for a pickup for tomorrow. And Troublesome needed some snuggles. And I went to take more pictures of Queen Tulip in her Catio.

x o x o, y’all

I also finished the puzzle that day. Tim didn’t notice. I left it out for a day or two but it got to be in the way, so I took it apart and put it back in the box. Eight, nine months later and I don’t really know what to do with it.

But anyway! Here’s where it gets confusing. Because these are in my notes from the end of the day, and boy howdy did I leave a lot of things out of my Facebook post. No, like, deep dark secrets or anything, just …. sometimes I’d get a lot of information at one time and wouldn’t really have the brain bandwidth to process it if a lot of other things had already happened that day. So. Let’s see what I told family before cleaning it up for Facebook …

Kay Pearson re: surgery paperwork/ explained procedures for 6:30 a.m. tomorrow morning

will go to 2nd floor for the valve replacement (if they can do the heart cath today, because they want to get that done before the valve replacement). Surgery can take 4-8 hours, and depending on how deep he goes under, up to another 4 for recovery.

Then to 7th floor- Unit 77 Cardiac Surgery Unit

They want him to wake up slowly so they can check each function as he slowly comes to

He’ll have drainage tubes under his chest near his abdomen for drainage for 2-3 days; an IV in his neck for all fluids, including meds; a radiation measuring device to check liters per minute, etc; then they’ll get him up for therapy the next day to walk around a bit. He will probably be in the hospital for another two weeks after the surgery, because of everything that he’s been through since he’s been here. Normally, she said, people can leave after this surgery in a few days, a week tops — but because of everything else (strokes, infection) they really want to keep him for a while to make sure he’s safe to leave.

Since he will have a broken bone, he will need help because he cannot push his body up. For 8 weeks he cannot lift anything above 10 lbs

It will be at least 4 weeks from surgery to drive because he must be able to independently walk to the car, get in and out of the car, and get about on his own. Until he can do that, no galivanting around town.

He will need inpatient rehab: 2 weeks in the hospital and then on to rehab – possibly four weeks. She recommends Shands for location/convenience, but says Brooks is very good, too. She says Brooks is actually a little better, but it’s in Jacksonville, and as Lore has family and a support system here in G’ville, Shands Rehab makes more sense for us.

In Tim’s case, he is young but there is multiple organ involvement so there’s lots going on. That’s why rehab may take a while, that’s why the two week stay after the surgery.

Valve replacement surgeon: Dr. Erick Jeng

They’ll use a tissue valve which is better for treatability. It may need to be replaced or worked on in 10 to 15 years, but the repair will be much easier next time – for people without the infection that Tim is also fighting during this, they don’t have to crack them open, they can do it orthascopically.

OK, again… this is a lot. Both Linda and Lore typed this up, thanks to Linda taking notes while Lore was talking with Kay Pearson about all of this. Hopefully we got everything down, but as always, please, ask if you have any questions!

Turns out most of that was moot, because (a) he had at least two more strokes some time between the 5th and the 6th and (b) they couldn’t get him the heart cath on the 5th… so open heart surgery was moved to the 10th. It was actually kind of “on call” every day, and every day it was pushed back. But y’all. Two more strokes. Sigh. I’ll get to that when I get to the post about the 6th.

This is the book I never read
These are the words I never said
This is the path I’ll never tread
These are the dreams I’ll dream instead
This is the joy that’s seldom spread
These are the tears…
The tears we shed
This is the fear
This is the dread
These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel
Do you know how I feel?
‘Cause i don’t think you know how I feel
I don’t think you know what I feel
I don’t think you know what I feel
You don’t know what I feel

Lyrics by Annie Lennox
Why