Another early morning trip to Philadelphia on Friday, brought us face-to-face with the surgeon who will be performing Greyson’s VNS implant procedure. Dr. Kennedy is a CHOP neurosurgeon who has performed this procedure hundreds of times. I’m confident that we are in very good hands and that Greyson will (hopefully) benefit from the device. Our initial consult was on Wednesday with the nurse who is responsible for activating the device, and she explained to me the device, how it exactly works, and how Greyson may benefit from the procedure. 1 out of every 3 patients have some success with managing seizures with the device. Though its not a 99.9% chance it will definitely work, Derek and I figured it is certainly something worth trying. After going through so many medications, we think this is the best decision to move forward. I just hope that 2 is a lucky number because his procedure is scheduled for 2/22/22.
The really cool thing about this device, is that it comes with a “magic wand”, that we can wave over Greyson’s chest if we feel like he’s going to have a seizure, or if he is actually seizing. Once we wave the wand over his device, it will activate and send a shock wave up to his vagus nerve, in his neck. That nerve then is responsible for telling the brain to calm the f down and stop sending epileptic waves to the brain. Kinda cool. The only thing that isn’t kinda cool, is that it takes the device about 3-4 months to be fully functional, and we have to take him into the neurologist’s office in Lancaster every 6 weeks until it is functioning at the appropriate level. We decided to get the procedure as soon as possible, so he was healed and (hopefully) adjusted well to the device before we go on our trip this summer.
Another downside to the device is that if the implant doesn’t work how we want it to work for Greyson (which it is common), we would have to wait several years before trying another surgical route. Dr. Kennedy explained that they don’t like to open up a child’s skull until the skull is fully matured and finished growing. We are really hopeful that this will work in our benefit.
Leaving Philadelphia on Friday to come home, it was so strange. I typically call my Mom once we are on I-76, to discuss the appointment and to get her opinion about what the doctors recommend. While pulling onto the turnpike, I realized that I couldn’t call my Mom and that she is gone. My emotions have been all over recently, and now to have this on top of it all, I am over 2022 already! I have been working hard on keeping myself distracted (otherwise I cry a LOT) by renovating old furniture. I have sold my first two projects, a vanity and a kitchen island and am SO excited to start working on my next project, a kitchen table. While this did start as a hobby, it truly has helped me cope with losing my Mom and all that is happening with G. Going back to work in the mental health field, while trying to cope with severe loss and grief, has been no easy task. The first week or so back, I was able to help out with insurance tasks, so I didn’t have to take any phone calls about individuals seeking therapy. First day back on the phones, I did get a pair of siblings who were seeking therapy to cope with the fact that their mother has terminal cancer. Even talking to the one sibling, I completely lost it.
I am not a cry-er. I honestly have cried more this month than I have in my 32 years of existence. I just never imagined losing my amazing Mother so young in life. By far the hardest part is having to discuss her passing with Roslynn, who now knows exactly what is going on. I am okay talking with her, but the random times when she gets tears in her eyes and says she “misses Nana”, are the hardest for me. Roslynn and my Mom were two days apart, both Geminis and I am a firm believer that is why they were so close. Two (not so old) souls who shared their love for music, family, card games and vintage barbies. And luckily, Greyson is blissfully unaware. At least I think he is. Regardless of our loss, I am happy that Roslynn has continued to push through first grade and continues to improve with each month that passes. I know my Mom would have been so proud of her and would have loved to listen to her read “Hop on Pop” to Greyson, as she does often before bed.
We are gathered here today to get through this thing called life.Prince
I fully embrace this quote. There are so many that I could write down that I relate to at this moment, but for now, I am getting through this life. Each day of chaos brings a new tomorrow, and though I am living in a complete blur at the moment, I am trying to find the positives in it all. Though I have had phone calls from his school almost daily due to seizures, a positive is that Greyson has not had to go to an emergency room in about a month or so. Small wins, right? For now, I will continue to push through life, accept the school’s phone calls, and use my new hobby as my coping mechanism. My Mom would have really liked my love for vintage furniture and chalk paint.
Leave a Reply