January 21 - Part One
A note from Nat
We’re in the homestretch!
Yesterday (and this morning) was the most I’ve seen Caroline like herself since the surgery. She is chatty, eating, and even reading a book for the first time since we got here! We have continued with A+ nurses so fingers crossed the streak continues.
Caroline is back on her medication and they were able to capture a few additional full seizures! That brings us to 6 seizures. At this point, they have what they need but additional info doesn’t hurt!
Originally, Caroline’s case (including these SEEG findings) was going to be reviewed at a surgical conference in two weeks. Since they were able to capture so much data over the course of a couple of days, her case is actually being presented tomorrow afternoon!
A surgical conference is a cross-functional meeting where patient cases are discussed as a group to determine the best surgical course of action. Each person brings their area of expertise, reviews relevant findings, asks questions, and brainstorms together. In Caroline’s case, this group includes her epileptologist, epilepsy monitoring team, surgeon/surgical team, and others. The last time Caroline’s case was brought to a surgical conference (to determine her current SEEG procedure) there were nearly 40 people in attendance! Since we will still physically be in the hospital tomorrow, one of the epilepsy doctors said they will stop by after the conference to debrief with us on their determinations.
The EMU (epilepsy monitoring unit) did have some challenges with their equipment last night and the live feed looked INSANE! We pretty quickly knew something was off (see below). Luckily, they are rockstars and someone on call came in to fix it right away.
Tomorrow is the big day! Once the surgical conference is over and they’ve officially confirmed that they don’t need any additional data, Caroline is scheduled to have the depth electrodes removed. This is a bedside procedure that Caroline will be awake for and has been the most anxiety-inducing element of this surgery for her. We have been assured countless times but multiple doctors and nurses that this a) isn’t as scary as it sounds, b) won’t hurt, and c) is super quick from start to finish. Assuming all goes well (which I’m sure it will), Caroline will be kept for observation and then discharged on Tuesday. Fun fact - did you know the 🧠 itself can’t feel pain?
We also found out that Caroline’s long-term disability coverage has been approved! Personally, I wasn’t worried about this since she’s getting literal brain surgery BUT it’s definitely a relief to have all of the paperwork get through. As the thorough planner she is, Caroline even called the insurance company to clarify something from the hospital. At one point in the conversation, she said “Sorry, could you repeat that? My medication is making it hard for me to process what you just said…oh yeah…I’m actually in the hospital as we speak for this brain surgery”. No days off for this one!
Don’t forget to scroll down for pictures!
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Sending our love from MGH.
Love, Nat
What should we name Caroline’s lesion?
As promised, we have a winner for our lesion-naming contest! Drumroll, please!!!!! The winner is Nyx! 🎉🎉
Nyx is the Greek Goddess of the Night 🌙 (when Caroline’s seizures happen) and the daughter of Chaos 🌀 (what the seizures create).
But as Aunt Amy said, “we just want it nixed!”.
A special honorable mention goes to Monica for “Julius Seizure” which is obviously hilarious.
Visit from Peachy, Ed & Matthew - Team Caroline showing up in style! (And Caroline's favorite color)
Maybe it was the in-laws, maybe it was the Dilaudid 🤷♀️
The stuffies and the muses. Oakley (and Maple) comfort from Grammy Johnson and Peachy.
Not only is Caroline LOVING everyone's videos but she also ate a sandwich yesterday!
Newest room sign courtesy of Matthew's creativity 🌃✨
Somehow WE ended up getting a treat from one of our doctors even though HE was on-call and had to leave his friends to come help us? They rock here.