So so far behind in blogging. I will catch up ... little by little. Promise!
WESLEE AND SEIZURES
It has been a week at least since I've had a decent night of sleep. Insomnia, listening for seizures, Weslee's nightly sleep-talking, and all that jazz. So I was still somewhat awake yesterday morning when I heard him have a seizure. He hasn't had one of his bigger ones in a while, so I had almost began to breathe again. But yesterday was rough. That new seizure that he's been having? The wiggle worm? It appears instead of laying down to wiggle, he now does it sitting up too. Promise that it was incredibly weird to watch.. over and over and over. Every couple of minutes. Wonder what the progression means.
It took an extra dose of one of his seizure meds PLUS his rescue nasal spray, to calm the seizures.
They started back up in the late afternoon so we did yet another rescue dose.
What is it about weekends and his increased seizure activity?
ME, THAT PURPLE MOM
It just occurred to me that I have worn purple nonstop, every single day, for the last 12 and 1/2 years. Whew! That's a lot of purple!
I hope that at least some of the conversations I've had that began because of my constant purple have succeeded in spreading awareness about epilepsy, SUDEP, and the sneakiness of seizures.
That IS the purpose of this website and my constant purple-wearing. To spread awareness.
WESLEE AND SURGERY PLANS
Weslee's inpatient stay at the Cleveland Clinic last year gave us a lot of information. These wiggle worm seizures, the little deja vu bits, and some other things we weren't sure were actually seizures ... ARE in fact seizures. They definitely showed up on the EEG he was hooked up to.
His medical team at the Cleveland Clinic reviewed all the data, from MRIs, EEGs, CAT scans and so forth, prompting a call from his Cleveland Clinic case manager, a doctor who had been there for quite a number of years. He suggested that there were a few options to go forward. Unfortunately, all but one required surgery. The one that did not include surgery, was basically the option where we do nothing. Just keep on keeping on.
I asked a lot of questions, came up with more questions for the case manager, got some decent answers, and hung up. It has been a few months since that talk, but the stress ways heavily on my shoulders. Do I send him back for surgery, or do we do nothing. And that first surgery that he would need to have, is the SEEG, which would be a repeat of the exact same surgery from May 1st 2019, that gave Weslee a stroke and put him moments away from death.
The stress of making this choice, as to what path we take, has overwhelmed me. I only recently made the decision that we go ahead with the surgery. The SEEG will give us more detailed information, if done correctly, as to where exactly his seizures begin, work through, and end.
Or they could do what **I** call a blind surgery, where they take the limited info from the Aug/Sept EEG in-patient and operate where their best guess indicates.
No matter which surgery, it will be a minimum of three physical visits there. My van won't make it again.
As soon I fix or replace my vehicle, I will contact the case worker to set up the next step(s).
ME...
The stress of figuring out the best choice for Weslee's health, coupled with my severe health issues, lack of funds, and so many more other aspects of life, I am not doing great. You probably don't want details. So I have been painting and marbling and experimenting with art, plus writing, when I am up in the middle of the night, as a way to relieve stress. I have high hopes. Well, not really.
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| Dot painting / Mandala. Need to fix a few places. Will have a black background instead of purple. Possible bookmark? Is there a market for this? |
Until next time...
Vikki, ThatPurpleMom.com
