February 1, 2022

February. A new month! There were ups and then real downs in this month. It started off slow but steady, it got pretty good, and then we moved, and it got bad, and it got worse. But that’s a good three weeks off. This is just the 1st!

I have these moments all steady and strong
I’m feeling so holy and humble
The next thing I know, I’m all worried and weak
And I feel myself starting to crumble

Good morning!

I got here on time but thought I was super late because I see them doing rounds at the room across the hall from us — turns out they have some much sicker patients on that end of the hall so they started rounds backwards this week. So they won’t get to our room until about 11 or so. Good news for us, I guess, in that there are people worse off than Tim here, but of course I feel bad for the families of the people on that side of the hallway. And selfishly, I’m like, man, I coulda slept an hour later!

But Tim is super alert this morning, so that makes me happy! He indicated he wanted his glasses when I got in, so I found them (is it possible to take glasses to a place while he’s sick and ask them to make me another pair with that same prescription? These glasses are falling apart.)

Then I put this in my notes just to family –

Still no results on any cultures from the samples they took a few days ago – I think they said four to five days for anything to grow, so I’m not too worried about no results yet. No results from yesterday’s CT either, but I imagine they have them and will talk about them in rounds, it’s just that rounds started backwards today.

Oh, as an aside, before I forget, they were asking yesterday about any gallbladder issues in the family, just in trying to brainstorm about any sort of issues that might be causing the fever (although his fever is gone today). I seem to remember maybe that all of the girl cousins have had their gallbladders out?

The meanings get lost, and the teachings get tossed
And you don’t know what you’re gonna do next
You wait for the sun but it never quite comes
Some kind of message comes through to you
Some kind of message comes through

And it says to you
Love when you can
Cry when you have to
Be who you must
That’s a part of the plan
Await your arrival
With simple survival and
One day, we’ll all understand

Now back to my public post –

The other thing one of the doctors came up with is that it might be something called… let me see if I can remember… ugh, I can’t remember what he called it yesterday but it’s basically a fever caused by getting IV fluids. That it’s one of those rare reactions that they don’t always think about because it happens so infrequently. But if they can’t find any other reason for him to have a fever – nothing worse with his spleen, nothing with his gallbladder, than maybe that’s it. He is looking a lot better today.

Not the best angle to tell from this picture, but during PT/OT this day, Tim washed his own face! He could only use one arm reliably; the other still wasn’t great (he could move it but it was very shaky/tired, and he didn’t have a great range of motion yet)… but he did it. He was so proud. I was almost crying. And he was so tired when it was over! But they sat him up and he stayed up on his own – their hands were just there to steady him if he leaned – and he washed his face on his own. He was coming back.

I had a woman who gave me her soul
But I wasn’t ready to take it
Her heart was so fragile and heavy to hold
And I was afraid I might break it

… fast forward about an hour and a half …

Finally, rounds! Aaaaaaaaaaaaand, nothing new or major! CT scans look good; no new brain strokes, lungs are looking a little more clear (but still not perfect), belly and abdomen look fine/the same/no changes. He’s only on the Vanc now, the other rounds of antibiotics are done. He’s not coughing as much with the new trach they switched out yesterday (I say, as he starts coughing). His color looks good, his numbers are good. They’re not going to take him off the vent today, just to give him another day of healing (knowing Tim, part of the last two days might just be that he pushed himself too hard that one day he spent five hours off the vent, instead of two hours). PT/OT did have him on the schedule but they might not be able to make it, and if they don’t, the nurse (today we have Josh again) says he might sling Tim over into the chair for about an hour anyway (they don’t need PT for the sling, just for if they want Tim to stand and move to the chair himself).

That’s about it, I think. It sounds like the next “hurdle” is getting him to a stable point (no more backslides or side-slides) so that the acute care center across the street will take him. Not having a fever helps (they won’t take him with a fever).

Your conscience awakes and you see your mistakes
And you wish someone would buy your confessions
The days miss their mark, and the night gets so dark
And some kind of message comes through to you
Some kind of message shoots through

And it says to you
Love when you can
Cry when you have to
Be who you must
That’s a part of the plan
Await your arrival
With simple survival and
One day, we’ll all understand

Let’s see… in other news? I spent a little time in the hallway yesterday in my second-most regular spot, while they switched out Tim’s trach… someone loves me — REALLY loves me, look at that TWO AND A HALF POUND CONTAINER OF MY FAVORITE TEA. Sorry, didn’t mean to shout. But daaaaaaaaaaang, y’all! I have been HOOKED UP! (And I have some hand lotions to add to the next nurse gift box I was going to put together!) … Moya loves the box it all came in and has claimed it as her own … Tulip has reluctantly agreed to come just inside the house and sleep on a squishy warm blanket that smells like Tim, but if I go to get near her at all (either to pet her or try to close the window to keep the heat in), she’ll zip out that window and into the Catio. Oh, speaking of which, I think something tried to break into it last night to get to the bowl of cat food, because Tulip was out there howling and yelling at someone, even spitting a bit, defending her territory. I tried to shine a flashlight out there but it’s hard to angle where I can see the ground, so I’m not sure if it’s another cat, or a racoon, or what. Hmmm, might be time to put the game cam up! …. and lastly, here comes the sun.

xoxo, y’all

Oh! And I almost forgot to add this picture – thanks to the stuff Jenny sent me, I had another basket for the nursing staff. This one also had some hand lotion that Cathy had sent along with the tea, and Kind bars from Quinn. I loved that so many people helped me show the staff some love. They took such good care of us, it was good to be able to spoil them a little.

There is no Eden or heavenly gates
That you’re gonna make it to one day
But all of the answers you seek can be found
In the dreams that you dream on the way

Lyrics by Dan Fogelberg
Part of the Plan