A moment from an impromptu recital we set up at Connie’s alma mater, Ithaca College.
It’s going to get worse before it get’s better.
That’s what they told us from the beginning. But honestly we’d seen nothing but progress so far — The assertion that she doesn’t have physical deficits ; The memory and speech being strong; The happiness she experiences having her family and friends around her.
Michelle and I witnessed a lot of good when we were there last week and through the labor day weekend.
As of now, she’s been in the ICU for 17 days. The minimum time in the ICU is 21 days. But it’s looking like she’s going to be there past that. And it’s not clear yet what’s next for her care.
This isn’t going to feel great to read, but this week Mom had a seizure during one of her PT sessions. She’s had a couple since then. The seizures have left her very weak and tired. She’s in what is called a postictal state, or the symptoms after the seizure, and it comes with confusion, drowsiness, hypertension, headache, nausea, etc.
Her eating is being assisted and her brain is being monitored by EEG. She still has the ventricular drain. My dad’s been by her side, and I know it’s really tough to see her like this. And he’s exhausted.
I talked with the nurse tonight. When Mom’s awake, she’s still able to follow commands like squeezing and wiggling toes. But she’s not speaking very much.
I’ve been waiting to get a call back from her doctor. I need more detailed answers on the results of her latest MRI and CT scans. Dad was told there’s likely no major brain damage as a result of the initial ruptured aneurysm. But without a doubt this week has felt like a setback.
The good news is she’s not having vasospasms in her brain which is what they’ve been concerned about, but these seizures are likely just a different set of issues related to everything.
Ugh. I wish I had a positive note to end on here. I just have to keep reminding myself and everyone that we were told it’s typical that things get worse before they get better.
I’ll write again as things start to turn around.
She’s been composing a lot of music lately, before all this. I think she’d be the first to tell you music isn’t always triumphant major chords. Right now we’re hearing the tension and dissonance in the bridge before the song resolves. Something like that.
Thanks everyone again for the cards and notes and gifts and positivity and prayers and love.
Luka
To give you something to smile about, the video below was made by Ithaca College when mom retired from 34 years teaching music. Such a wonderful career to look back on. The nurse tonight (one I hadn’t met yet) echoed all the other nurses — that she’s her favorite patient. She continues to have a positive impact on everyone who meets her.