Surgery-VNS- Scheduled

Ladies and gentleman- Surgery has been scheduled and we’re prepping for all that comes with it :)

Beyond excited doesn’t even begin to cover how we all feel right now. This adventure over the past 6 years has been, at times, a living hell. We’re now here with some solid answers and an actual plan.

Our VNS procedure is scheduled for 4.16.25 at Seattle Childrens!!

While VNS has been around for some time now there are a few things that I just cant help but worry about. The possibility that her vocal cords are touched and her voice is changed to a hoarseness rasp forever, the risk of tapping something else and having her lose motor skills or even memory, or even the chance it could get infected and need to be removed- only to be replaced again.

I know ill only drive myself crazy if I think about the ‘what if’s’ but, I’m a mom and its my job… right??

The odds are good- there is a 1/3 of people who get no benefit from the device. A 1/3 of people who see 30% to 50% reduction. And a 1/3 who see greater than 90% reduction. The odds are in our favor, that we will be one of those, at least that’s what I’m praying for. Then there is still my rearing thoughts that pop-in to remind me, Malia is an anomaly. Medications don’t work for her, she has no triggers, no warnings, no rhyme or reason for episodes. She dances to the beat of her own drum in those ways. We have been told that VNS has not been studied in anyone with her mutation, DEPDC5. So this either means it could not work at all OR it could be the best results ever. Only time will tell. I’m going to do my best to keep thinking about all the positives and keep in mind that we’ve made it this far so whatever the future holds we can make it through that too.

And did I mention this procedure will reduce her risk of SUDEP from the moment its turned on.(2 weeks after surgery). We will be significantly reduced compared to her now 40% risk.

VNS will take a year to see full benefits - so don’t you worry there will be plenty to keep posting about.

Next: Preops and case schedule to be set.