January 27, 2022

Right before he’d had that terrible backslide on the 14th, I’d bought him this awesome laminated board. It had things on both sides, you could point to things you wanted or things you were feeling. It’s fantastic for people who can’t verbally communicate. They use them in nursing homes and care centers, that’s where I’d gotten the idea, and I found this one on Amazon. This was one of the maybe two days I got to pull it out, though.

The color of the sky as far as I can see is coal grey.
Lift my head from the pillow and then fall again.
With a shiver in my bones just thinking about the weather.
A quiver in my lips as if I might cry.

Well by the force of will my lungs are filled and so I breathe.
Lately it seems this big bed is where I never leave.
Shiver in my bones just thinking about the weather.
Quiver in my voice as I cry,
“What a cold and rainy day. Where on earth is the sun hid away.”

It looks like I posted the same thing on Facebook as I sent to family, so….

Yesterday turned into a Good Day, and today is starting off pretty well, too!

Yesterday, PT came in, and they started with just getting him to swing his legs off the side of the bed. Tim did so well with that, and so well sitting straight(ish) up on his own, they decided to try him in the chair. LET ME TELL Y’ALL, three days ago I would NOT have thought I’d be seeing him sitting up in a chair any time soon!

I left yesterday pretty soon after they put him back in the bed, and then this morning when I got here a little bit before 10, they already had him sitting up again! He was already a little tired and fussed, but they wanted him to sit up until 11, so we held hands and watched cooking shows for a while.

I’m telling y’all… as guilty as I felt for not mailing that Chex Mix out that’d I’d made right before Tim got sick….? That shit fed me for over a month. Crunchy. Salty. Full of nuts. I could eat a handful at a time and go on to other things quickly. It really was the perfect snack. I’m sorry I couldn’t share it this year!

I hear the sound of a noon bell chime.
Now I’m far behind.
You’ve put in ’bout half a day
while here I lie
with a shiver in my bones just thinking about the weather.
A quiver in my lip as if I might cry,
“What a cold and rainy day. Where on earth is the sun hid away?”

Then I had to leave the room for a bit, because after they got him back in the bed, they put in his PICC line, finally. I think the only thing left on the checklist for today (besides rest) is that at some point, they’re going to take him off the vent for a bit. He’s got the trach now, but it’s still hooked up to the ventilator, even though Tim himself is doing most of the work. The idea is to take him off it for about an hour today, if he can handle that long, to breathe totally on his own. Then they’ll extend that time every day, until he’s completely off the vent.

I feel like there’s something else I forgot, but either I didn’t, or I’ve totally forgotten it because nothing in my notes is popping back up.

Happy Day That Ends in “y”!

Do I need someone here to scold me
or do I need someone who’ll grab and pull me out of this four poster dull torpor pulling downward.
For it is such a long time since my better days.
I say my prayers nightly this will pass away.

Just a super-quick update after they got him back into bed but before they kick me out so they can put in the PICC line.

So I think the main things for today are
– the PICC Line (they’re in looking for a good vein for that now, with the ultrasound)
– he already sat up in the bed for two hours
– the way the trach is set up, it’s still attached to the vent, although Tim himself is doing most of the work. Today they want to try taking him off the vent for an hour, or however long he can stand without exhausting himself (but no more than an hour).
– they’re going to diurese him again (get him to pee more), but will also be keeping an eye on that level so that they don’t dehydrate him again.

I feel like there was something else I forgot, but I’ll get with the nurse after they do the PICC line and see what it is I forgot (if anything).

When I got home there was another care package waiting for me (no, not the kitten, haha). I carried that worry stone around in my pocket for the rest of the … event? Time? What do I call all this? The Experience? Anyway. I tried to remember to thank everyone who sent me something, everyone who did something for me, everyone who even said a kind word. I couldn’t have made it through without you all. If I forgot to thank you, please know, the thanks was in my heart, 100%.

The color of the sky is grey as I can see through the blinds.
Lift my head from the pillow and then fall again
with a shiver in my bones just thinking about the weather.
A quiver in my voice as I cry,
“What a cold and rainy day. Where on earth is the sun hid away?”
I shiver, quiver, and try to wake.

Lyrics by Natalie Merchant
Like the Weather