The VNS deets

Post-op snuggle, 5/29/19

Post-op snuggle, 5/29/19

In December, I swore that Adelaide would never undergo another invasive procedure again. Excuse me for a moment while I eat my words. To be fair, my reasoning for that decision was we were going to be making Adelaide’s quality of life our first priority over diagnostic testing and even seizure control. None of that has changed but this week Adelaide did have a Vagus Nerve Stimulator placed in her chest and neck by a neurosurgeon. The device is roughly the size of two quarters next to each other and about as thick as two quarters on top of each other. It connects to a wire that is wrapped around the Vagus nerve in her neck which runs up to her brain. In the simplest of terms, it is kind of like a pacemaker for the brain, helping to regulate electrical activity that is abnormal in patients with epilepsy. The goal is to prevent some, maybe most, seizures by sending electrical impulses to the brain. But wait, it gets cooler, we received magnetic wands that we swipe over the device in her chest *mid-seizure* to try and stop the seizure in its tracks. Aside from being bionically awesome, it could potentially reduce the need for her rectally delivered rescue med. The latest models can also detect a rise in heart rate which is often correlated with Adelaide’s seizures. As amazing as this all sounds, it is simply another treatment, not a cure, but does have a higher success rate than many frontline meds.

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Why did we opt for another invasive surgery? As I stated before, our primary goal is still to improve Adelaide’s quality of life. Nearly every new med we have tried in the last year has had devastating side effects, some have nearly killed her. Yes, we’ve tried the ketogenic diet. Yes, she is on CBD but so far, no dice. One of the most common side effects from VNS is a sore throat - yeah, as Adelaide’s spokesperson, I think we can handle that. Worst case scenario is that it doesn’t work and she’s left with some fancy hardware in her body. BUT, what if it does help control her seizures, what if we can wean her off some of the other meds she’s on, what if we can get her a little more awake and alert? That’s a lot of what-ifs but, OH MY GOSH, am I sick of nasty med side effects! On the flip side, the biggest detractor for the device, is that it can take anywhere from 3 months to A YEAR to see if it works. We are very quickly running out of meds to try to control Adelaide’s seizures and improve her quality of life. But there is a chance that by this time next year Adelaide could go from being on four anti epileptic drugs to just one or even none. The cautiously pessimistic side of my brain is suuuuper hesitant, especially given the long time frame. Realistically, we have to keep her alive long enough to even see if it works. To which I can hear Adelaide saying, “Have you been paying attention at all, mom? Do you remember how unbelievably resilient I am?” I mean, she does have a point.

Home sweet home, 5/30/19

Home sweet home, 5/30/19

Adelaide came through the surgery like a champ, not an issue to be had. My daughter is a total bad ass, (the surgeon, anesthesiologist and nurses did well too, I suppose). According to insurance VNS placement is an outpatient procedure, but Miss A’s medical team still felt “more comfortable” having us stay overnight to be sure the surgery and the device did not impair her breathing. Which it didn’t. From a liability stand point I get it. From the we-have-home-nursing-and-medical-equipment-and-can-take-better-care-of-her-at-home standpoint, I was annoyed. Don’t even get me started on all the illnesses she can pick up in the hospital. Aaaanyway, we’re home now, she’s doing awesome and now we wait. In 10 days we go back to the neurosurgeon to make sure her two incisions are healing properly and in two weeks we will see her epileptologist to have the VNS actually turned on. They briefly test it during surgery to make sure the device isn’t faulty, but let her body heal before activating it, which seems fair. Over time her doc will adjust the electrical charge level to find the right setting for her. Not so unlike adjusting meds dosages I suppose. In the meantime I need to make sure that we place tracker tiles on all the magic wand thingys so that they don’t go missing. To take a line from Hamilton, “I know who I married”.

So, we’re home, and life moves on. Another treatment added to our list with the same hope and trepidation as each med and treatment before it. Another device added to Adelaide’s body that I never could have imagined at her birth. Thank you to everyone who reached out with well wishes and support this week - it truly meant so much to us all. Now, if you’ll excuse me, I need to sleep for like three days straight.

If you are interested in learning more about VNS, “Seizing Life”, the podcast I host in association with CURE, will be releasing an episode covering this very topic on July 3rd. You can listen in on most podcast services or watch the episode at www.selzinglife.org. You can also see pictures of our entire VNS journey by watching the story highlights on my instagram: @kellygc411.

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