January 30, 2022

A couple of things about this day… I had a regular post, but then this was the first day I posted on Caring Bridge. This made it a lot easier for me, because while I was still writing things to family and editing it for lighter public consumption, at least I only posted in one place. I didn’t take many pictures over the next few days… but I did go home and set up my spinning wheel, and got some spinning done. Spinning relaxes me. And gives me pretty yarn when I’m done!

First off, here’s what I sent to family earlier in the day that day –

I think yesterday I mentioned Tim had a small fever? It did kick up last night, and his blood pressure got a little lower than they want, so they gave him a little something for the fever (which then went down) and then they gave him something for the blood pressure (which went up) and now they have him a little more sedated than he was yesterday just to keep him from coughing so much.

Speaking of the coughing, they have two ideas — one is to start him on an anti-fungal, in case there’s a fungal infection (it’s pretty much the only thing they haven’t tried at this point) and the other is they wonder if the inside bottom of the trach is hitting the back of his throat in such a way as to activate his cough reflex. In hindsight, OverNurse Kim says maybe they should have given him a longer tube, but today is Day 7 out from that (usually the earliest they like to go back in, as they want it to heal) so they might go in tomorrow and give him a longer tube.

They also took blood cultures, even though they’re not expecting to grow anything – he didn’t grow anything from the last set, but just to be on the safe side in case he is working on another infection.

Other than that, they’re hoping for a slow Sunday. They don’t have plans to put him in a chair, they don’t have plans to take him off the vent and let him breathe on his own. Mostly they want to give time for the test results to come back, and to let him heal and rest.

In other news….? I don’t recommend this High Stress Diet to anyone, but I have lost six pounds in the last five weeks. Imagine how healthy I’d be if I were also getting regular exercise! 😉 At least I’m eating well. I was telling Jenn yesterday, I feel like I’m back in school. The first two things I do when I get home for the day are get my lunch together for tomorrow, and put clothes out to wear the next day. Oh! Also, thank you all! I am good on stamps!

I hear there was supposed to be another sign-waving extravaganza today, but Tim being sedated coupled with the outrageously cold weather, I wouldn’t ask anyone to do that — so I think it’s being postponed until next weekend. I think Stephanie is the coordinator, if anyone wants in on that?

xoxo y’all

Some say love, it is a river
That drowns the tender reed
Some say love, it is a razor
That leaves your soul to bleed
Some say love, it is a hunger
An endless aching need
I say love, it is a flower
And you, its only seed

Then, there’s the small thing I put on Facebook talking about moving to Caring Bridge… and what I posted over there, which was basically a recap because I was already exhausted by then, that day.

To try to make things easier for people both on and off Facebook, my dear friends have helped to set me up with a CaringBridge site where I can write my daily posts about him, and everyone who cares for Tim and his family can read it, whether they and I are Facebook friends or not, if they’re not even on Facebook, etc. Here’s my first post. I don’t know that much about CaringBridge yet, but I believe you can subscribe to the page (maybe?) to get emails when there’s a new post. Through this, also, we can do Meal Train things, and there should be a place where I can ask for help with specific things if I ever need it (things out here at the property, or in town with anything with Tim if for some reason I get stuck out here, and so on).

It’s the heart, afraid of breaking
That never learns to dance
It’s the dream, afraid of waking
That never takes the chance
It’s the one who won’t be taken
Who cannot seem to give
And the soul, afraid of dying
That never learns to live

The last fifty days have been a ride, y’all
Journal Entry by Lorena Haldeman — January 30, 2022

There’s all sorts of long things I could say about each and every day, but – and I’m sure y’all understand – there’s only so much of me, only so much brain bandwidth. So instead, here’s a tl;dr recap.

… and there we are. Ooof. I got tired just going over that!

And other than that… not a lot happened that day, I think. I don’t have any other notes other than this,

When the night has been too lonely
And the road has been too long
And you think that love is only
For the lucky and the strong
Just remember in the winter
Far beneath the bitter snows
Lies the seed that with the sun’s love
In the spring becomes the rose

Lyrics by Amanda Mcbroom
The Rose