Ava the Brave

 Ava the Brave is having another brain surgery today. One of the defining characteristics of intractable epilepsy is the frustratingly short duration of efficacy in treatments. There is a honeymoon period of great success, but seizures have an annoying way of tenaciously finding new neuro pathways through which to wreak havoc. Ava’s seizures have been dramatically increasing over the past months, and she’s back at Mott today as her neurosurgery team tries to give her a better chance at seizure reduction. She’s been down a similar road before with her last brain surgery, but this time they’re moving in a slightly different direction with an RNS implant. Similar to her VNS device, implanted in her chest, which has helped stop some of Ava’s smaller seizures, the RNS will also try to intercept and stop seizures. But, the RNS device is implanted on the brain with leads connecting directly to the suspected foci. The device will grow smarter with time and zap the seizures where they start, as well as function as a continuous EEG. Today’s surgery implants 18-20 depth electrodes to determine those foci, hopefully paving the way for the RNS implant in about a month. It’s a rather long surgery, as the neurosurgery team uses ROSA in a robot-assisted procedure, to implant the electrodes. Our robo-girl continues to acquire more bionic parts! We marvel at both the technology and the extraordinary humans at Mott who care for our most precious human.

So, Ava’s going to be rocking the bandanas for awhile and we continue to hope that the endless sacrifices will bring her better health and happiness. When Ava is out of surgery and ICU, she will move to a regular room for 1-3 weeks. I know she would love reading your messages of support here. Thank you all for the prayers and well wishes! 

Ava, aka ‘17 Electrodes’, is doing better today. After a rough evening, pain and nausea are a bit better today and we hope to move out of the PICU and to a regular room soon. The plan is to hook up the surface electrodes along with the 17 depth electrodes already in place and waiting, and then wean the seizure meds. They need to lower the seizure threshold to capture as many seizures as possible, to determine the foci. It’s a heck of a thing to hope for seizures, and the emotional weight of that is enormous. Ava continues to be one scrappy, tough young lady. Thank you for the many kind posts, prayers, and words of encouragement. I’ll share all of them with Ava as she gains strength.

I’m way behind in posting updates and in thanking everyone for the wonderful messages. They’re really cheering up our very patient patient here. “17 Electrodes” is still hanging tough, and we continue to wait for a good assortment of her typical seizures, reducing meds again and introducing sleep deprivation tonight. 

We received the most amazing care package from my sister Lulu. My Mom (Ava’s dear Munga) passed this May, and this beautiful bear was lovingly made from one of my Mom’s favorite shirts. Ava immediately picked up her Munga Bear and pressed it to her forehead, looking deeply into her eyes, even before she knew its significance and where it came from. Pressing her forehead to Ava’s was something Mom often did, and we have a framed photo of the two of them doing exactly this! I know without a doubt that this was a Munga/Ava Moment today, and Ava and I both shared some happy tears. What a beautiful way for us to continue to feel close to her!

Hurray! It’s Homecoming Day! It’s been a rough couple of days, with some scary moments and more pain than expected; but, Ava had her electrodes removed yesterday and she’s coming home today. Now we wait to see how the Mott neurology and neurosurgery wonder team assembles the massive constellation of compiled data, how it all lines up, and what the next surgical steps may be.