February 16, 2022

Ironic that this is posting on Thanksgiving, becasue I think it’s the last day I felt I had even the tiniest thing to be thankful for in all of this. The nurses were all SUPER thankful, too, because thanks to the generosity of friends I brought them this gift basket. People were even still thanking me in the elevator the next day!

On another day (c’mon c’mon)
With these ropes tied tight can we do no wrong
Now we grieve ’cause now it’s gone
Things were good when we were young

With my teeth bite down I can see the blood
Of a thousand men who have come and gone
Now we grieve ’cause now it’s gone
Things were good when we were young

Today is a little from column A, little from column B….

Tim pulled his feeding tube out AGAIN. When I got here and he waved at me, it took me a second, but then I was like, “Oh! Your feeding tube! It’s out! That’s awesome” and he kind of looked at me sideways and I said “Oh, unless you pulled it out again….” and then … wait for it

(no, seriously, sit down)

he nodded and THEN HE SAID “yeah, I pulled it out again.”

HE IS TALKING.

I KNOW.

I’ll give you a minute.

He didn’t have the cap thing on his trach that meant he could totally talk, so his voice was very quiet and muffled, I had to get right up to him to hear him…. but so far this morning he’s asked me if I want to go to dinner, he says that Daniel is a good nurse, that he’s tired of being here but doesn’t really understand where he is or what’s happened to him.

His hands look so skinny in this picture. I’m so used to seeing a picture I took more towards the end, when he was so swollen… his thin little fingers here look emaciated compared to that. Plus, he needed his nails trimmed. I think we did that as part of PT/OT some time in the next day or so – he did a couple of them himself but it tired him out pretty quickly. Speaking of being tired out, those Rubik’s Cubes really tuckered him out as well. I actually felt pretty guilty about them, later. He only played with two or three of them, never solved any of them, and didn’t spend more than a couple of days on any of them. I felt bad that I asked people to buy them. I felt bad that he didn’t solve them. I just felt bad all around.

Is it safe to say? (c’mon c’mon)
Was it right to leave? (c’mon c’mon)
Will I ever learn? (c’mon c’mon)
(c’mon c’mon c’mon c’mon)

As I make my way (c’mon c’mon)
Through these battered nights that seem too long
Now we grieve ’cause now it’s gone
Things were good when we were young

We have the same nurse as yesterday, and this morning I walked out to find her because I’m not going a second day without knowing really what’s going on. She was much friendlier today than yesterday, admitted that she was super busy yesterday with training her duckling. She said that she works on the ward regularly, and in fact had helped one of our nurses with Tim a few weeks ago when she was a support nurse instead of being in charge of two patients, but that she’s not surprised if I don’t remember her (I do not).

She verified that Tim pulled out his feeding tube, that he’d gotten agitated at some point last night. They haven’t put it back in because they’re waiting to hear back from Speech if they want to come today and give him a swallow test as long as he doesn’t have the tube in. They’re giving him necessary nutrients via IV for the moment, and if Speech isn’t going to come today, they’ll put the feeding tube back in.

She also said “and then I’ll be back in, in a couple of minutes, to give him a Covid test.” Before I could ask if that was becasue he was going down for an MRI or something (they make him take a Covid test before any trips downstairs) she said it’s because he’s been medically cleared for movement to Select acute care facility, so we’ll be moving there probably by the end of the week, barring any unforeseen setbacks.

Let’s hope for no unforeseen setbacks!

In retrospect, “medically cleared for movement to Select” is the worst sentence ever uttered.

With my teeth bite down I can see the blood
Of a thousand men who have come and gone
Now we grieve ’cause now it’s gone
Things were good when we were young

Is it safe to say? (c’mon c’mon)
Was it right to leave? (c’mon c’mon)
Will I never learn? (c’mon c’mon)
(c’mon c’mon c’mon c’mon)

But wait there’s more!

PT/OT came in, and… OT doesn’t understand why we should need to go to Select if Tim’s off the vent all the time — he’s still got a trach, but has been fully off the vent/assisted breathing for about five days. So both she, and one of the PTs, are going to check on Tim’s chart to make sure that the trach downsize has been noted, and they’re both going to add recommendations that he go straight to UF Health Rehab, not to Select first. Side note to my side note, the OT used to work at UF Health Rehab, so she’s familiar with the kinds of patients they take and thinks he’s more than ready for that and doesn’t need Select. We’ll see what happens.

(Obvs I’m trying to write this as things are happening around me, so my writing might sound weird as you’re reading it)

Hahaha, the PT dude (the one who a few weeks ago told me his aunt had gone to UF Health Rehab) just told me he messaged Seagull Case Worker about bypassing Select and that he can see that she’s seen the message but she hasn’t answered it yet, and hopefully she’ll be down today to talk to me. I was like, or maybe she’ll just approve it and not have to talk to me, because I think she’s a little afraid of me. They laughed and laughed, haha.

Whew! What a whirlwind this morning!

In other news? Y’all are so generous, so amazing. Thank you. I’m going to start bringing Tim a new Cube every other, or every three days, depending on how fast he either solves them or gets frustrated with one of them. Thank you, thank you. <3

This is another one of those “whoa, in retrospect” writings. I was so excited about the Rubik’s Cubes… that didn’t pan out as happily as I thought it would. I was almost hopeful he was going to move to Select, or even to UF Health, and that turned out terribly. He was medically cleared, but then got worse between the time he was medically cleared and the time they moved him, making me think they shouldn’t have moved him at all, and believe me, I made that WELL KNOWN over at Select. Anyway… it’s just sort of sad. This could have, should have been a turning point trending upwards, and looking back on it, it was… not.

Is it safe to say? (c’mon c’mon)
Was it right to leave? (c’mon c’mon)
Will I never learn? (c’mon c’mon)
(c’mon c’mon c’mon c’mon)

And on this day these deepened wounds don’t heal so fast
Can’t hear me croon of a million lies that speak no truths
Of a time gone by that now is through

Lyrics by Jason Stollsteimer
C’mon C’mon