Letter Two: Two weeks after

Hi All,

So I’m in my second week since the surgery, and other than being extremely tired (like going downstairs for a drink and coming back up is a momentous activity), and my head hurts like I had brain surgery or something, I’m pretty good. I feel a little better each day than the one before and got the staples removed (there were about 15 of them on the incision on my head) yesterday, without anesthesia (not awful, but not awesome). I’m a couple of days out from having to take Oxycodon, and have even started to reduce the Onfi, which was the newest medication that I was put on in February to just put a stop to the cycle of seizures. Onfi is in the Valium family which did it’s job, but not fun stuff.

By all accounts the surgery itself went really well, and although we’d all love this device to just start controlling my seizures immediately, unfortunately like everything else seizure related, it doesn’t work that way. This next part will be a process as well, yay. We are on the other side of the worst of it though, and at least we’re not in a perpetual state of waiting and anticipation. 

It’s here! The RNS device is in and is now recording all of my brain’s electrical activity. Every night I download that data into a computer and send to my docs so that they can look over, study, and then start programming the device in my noggin to respond accordingly to the electrical activity that looks like a seizure. So yes, I am bionic now. The thing we are most relieved about though, is that they don’t have to see a Grand Mal in order to turn on the device. The hope is that over time the device will be able to quiet the seizures, reduce the severity, plus we hope I’ll be able to reduce the medication I have to take in general. 

In the meantime, I feel so loved by you all I can’t even begin to express my gratitude, but I’m going to try anyway :). Ben came and stayed with us before the surgery, documenting this whole process of me becoming Bionic with footage that may or may not become an actual documentary. . . ?! Stay tuned. The documentary was a great excuse for us to hang out. He and Chris brought me to the hospital on the 25th, but neither of them were allowed in before the procedure so Chris went home to wait and Ben stayed with friends in the Boston area so he could come in the next day. The hospital allows me to have one person in to be with me while my patient advocate discussed how to use my new super fancy device. After which time he and my mom basically did a hand-off so that he could go home to Philly and my mom brought me home. She stayed nearby so she could help out for a couple of days before going home. My friend Laura organized a whole meal train, (organizing friends and family to order meals or get us gift cards to my favorite restaurants, so that was one thing I didn’t have to think about). Something I didn’t even know I needed. 

Everyone that’s getting us meals, checking in on me, and offering and picking things up for me/us, thank you, thank you, thank you!

I’ll try to write more soon-

Lots of Love,

Emily

PS. I hope that wasn't just a rambling collection of thoughts, but if it was, mea culpa, I’m still recovering from Brain Surgery! :)