January 24, 2022

This was a cold day (as evidenced by my photos of frosty things). It seems like some stuff happened, but I don’t really remember much of it. I checked my notes for the next day and see that I wrote that this day was frustrating and stressful, not bad, just more … grinding me down. But it doesn’t seem like it, reading this, so I wonder what I didn’t write about and have since blocked out….? Brains are weird, man.

Deep in your heart there was once a diamond shining bright
Every dark place you passed by turned into light
But somebody broke into your heart and blew out your lights
And your sparkling little diamond turned pale overnight

First, what I both sent to family and posted on Facebook

Hooray for a slow night!

Mostly they weaned him off stuff last night; most of the pain meds, all the sedation, the Flovex (?) that helps with blood pressure – he’s keeping that up on his own now at a level they’re very happy with.

The only thing planned for today is to have a meeting with the cardiologists; and that could happen at aaaaaaaaaaaaaaaany time today (so, clearly a rush) (not).

He is a little more alert, he made eye contact with me a little, but mostly he’s just staring at the TV or the ceiling, and blinking. He does look in my direction if I’m quiet for a few minutes and then start talking with the nurse or the housekeeper, but since he’s still on the Fentanyl, I’m not sure how much he’s really fully awake for. He did react on purpose to the neuro test this morning, and wiggled his toes, and he squeezed my hand when the nurse was suctioning his trach (but that could have just been a reaction to the discomfort, also).

In other news, I got some new jersey-tie masks from Erin and they hold in the N94 perfectly so that it’s not poking my eyeballs, plus I figured out finally how to fold it down and get it to stay down, and at exactly where in the loops I should put the knot to make it a little tighter, so when there’s nobody, or only the nurse in the room, I’m just wearing the 94. If I’m walking through the hospital, now, I’m double-masked (our wing isn’t the Covid wing, so I’m not feeling any less safe overall, but I did see a thing in the news about how Shands is a big Covid hospital) (so mostly I’m saying this to hopefully reassure all y’all). Oh, and apparently, 27 is the temperature that will drive Tulip inside to sleep in the house. Which I wish she’d moved in about six more inches, I could have shut the damn window and kept it a little warmer in my bedroom. Because yeah; it’s cold. Don’t @ me with your stories of 17 feet of snow, I’m not trying to one-up you with weather. I’m just stating that for Florida, 27 is cold. 😉

That’s really kind of it….! Hopefully “slow news is good news” is the new motto for this week!

What the hell has become of that pretty girl so sweet and nice
Where have remained your insatiable thirst after life
Girl what ever they have done to you, where ever you are
No ever so big force on earth could kill a burning heart

Then, what I only sent to family

Just a little update before I think about heading out today (I was going to leave at 4, but now I don’t know – maybe earlier, maybe later). Tim has been arguing with us all day about various levels of things (the floor nurse (charge nurse?) (OverNurse?) said I could tell him they all think he’s a delicate flower, haha).

When I say “arguing,” I don’t mean that he was sitting up and telling us he wasn’t going to do whatever – laws, I wish that was the case. No, what I mean is that the nurses would adjust something and his whole body would respond negatively, and they’d have to go back to whatever the thing was before. His body didn’t want change. 

One thing that’s been ongoing for a while is his blood pressure; he “likes” the sedative they’d been giving him too much, and has been relaxing too much into it, so they have to give him stuff to keep his blood pressure up, and they didn’t want to keep doing that so they started decreasing those things a few days ago. Now he’s off the blood pressure stuff and today he’s been a little pissy about it. But at the same time his heart rate keeps going up, sometimes into afib and sometimes into aflutter, which the OverNurse doesn’t like (from our frenemy, Doctor Google: In atrial fibrillation, the atria beat irregularly. In atrial flutter, the atria beat regularly, but faster than usual and more often than the ventricles, so you may have four atrial beats to every one ventricular beat.), and he’s still got a fever, which she also doesn’t like. So she’s called for more blood cultures to be grown, which does take a couple of days so it’s not a quick answer, but she’s wondering if the antibiotic they took him off yesterday should have been extended by a few days — she’s trusting her gut and running some tests, in case he still does have an infection they thought they stopped but was hiding somewhere. He is still on the Vanc, so he’s not OFF antibiotics, they just might need to put him back on a second one.

They also put him on some fluids again, because they did an ultrasound of his heart and it was looking at little dry — guess he’s been peeing off too MUCH fluid, so they’re loading him back up again. Ideally, the OverNurse says, he’ll respond well to the fluids, and the cultures will grow nothing, and the fix will be the fluids.

Shine on, shine on
Don’t let the bastards drag you down
Shine on, like a torch burns in a storm
Shine on and on, and keep the fire burning
Shine on, shine on, shine on

One last thing — they were turning him, and he threw up (no easy feat with the trach, oh, Timmy Sean, you always gotta do your own thing). They suctioned the trach immediately and no vomit got in it, so that’s good. They don’t know WHY he threw up, but when I explained about him getting motion sickness laying flat, and pointed out that they had just laid him flat to move and turn him, and had gone pretty fast at both the laying flat and the putting him back up again, they seemed to think that might have been it. They gave him some Zofran, and he’s hacked a little since then but hasn’t thrown up again. The OverNurse also decided to take him off the tube feed for 24 hours, because she’s looking at everything that’s changed for him in the last 24 hours and seeing what we can dial back on or ramp up to get him back to that base level, and then start again.

I wouldn’t call this a full-on backslide, more like … in the last two days we’ve taken a full step forward, and now we’re taking, like, a third of a step back. We’re still ahead of where we were 48 hours ago, is what I’m saying.

Your train ran off the rails, hey girl you didn’t lay the tracks
If you wanna reach for the sky you have to go through hell and back
Don’t deliver girl, let me take you by the hand
At the end of the rainbow the way of cross still ends

And then, later that night after I got home and got a call from the hospital, I added this to family

Just a quick note to say Tim’s scans are back and are boringly normal! The hospital called me to let me know that they got both the CT results and the ultrasound results, and everything looks fine. In fact, his lungs, while not great because he does still have pneumonia, look better than they did on the scan four days ago. And everything in his abdomen looks the same as it did four days ago, so… on one hand, this is awesome – there’s nothing new and worse to see. On the other hand…. Where’s the blood pressure issue coming from, then??? Is it from weaning him off so much support and his body is just going wonky trying to relearn what to do? Did he pick up an addiction to one of the pain meds (I mean, he has been on them pretty much solid for two weeks now so who could fault him) and this is withdrawal? They’ve been loading him up the last couple of days with things for Diuresis (to get him to pee out all the fluid they gave him the first few days after the surgery), did they give him so much that he was just a little dehydrated? So the nurse said they’re going to keep him going with the fluids tonight, that they put him on around 3 PM (also about the same time he started stabilizing, so…..), and really just kind of leave him alone other than checking on him when something beeps – let him sleep, let him rest, let him recover from yesterday and today being so exciting… and then we’ll all see where he is in the morning! Oh, Timmy Sean. You just can’t do anything the easy way, can you?!

Hmm. In retrospect to what I put at the beginning, I guess it was kind of a busy day. Or rather, a hard day that I didn’t really talk about other than in notes to family. Why didn’t I talk about it? Did I want people to not worry about Tim? Did I not want them to worry about me worrying about Tim? People were already saying to me that they hated that things were getting worse/harder. Did I not want them to know it was even worse, even harder than what I was telling them? Why? Did I think they wouldn’t believe me? Maybe I didn’t want the attention. I wanted the attention to be on Tim, and how he was – not on me, and how I was dealing (or not dealing) with it.

Shine on, shine on
Don’t let the bastards drag you down
Shine on, like a torch burns in a storm
Shine on and on, and keep the fire burning
Shine on, shine on, shine on

Lyrics by Burgh/Christopher
Shine On