Day three is (nearly) in the books! I didn’t really anticipate these updates going out at night but 🤷🏽‍♀️ That’s show biz! Bear with me! I’m officially freeing myself from my social anxiety about the timing and length of these updates.

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First and foremost, Caroline is still doing well managing pain and has been such a trooper about the constant poking and prodding. Aside from the occasional headache, Caroline is completely unaware of the depth electrodes themselves. She has (mostly) gotten the hang of navigating the massive/heavy gauze head wrap. The pet carrier case of cords still exists. We’ve gotten into a good medication schedule that everyone is on board with. She is eating more and staying hydrated! Shout-out to the quiche from Flour!

While the Epilepsy team continues to be optimistic about the amount of data they’re getting, they spoke a little too soon about Caroline’s ability to go home before the weekend. During this morning’s rounds, the entire neurology team came to update us - neurology doctors, epilepsy monitoring team, PAs, medical students, nurses - you name it.

Unfortunately, Caroline only had one seizure last night. While we would normally call this a win in regular life, we need much more seizure activity captured while she’s undergoing the SEEG study. For context, Caroline usually has 5-8 seizures a night. While I’m here, I try to help out the Epilepsy Monitoring Team by describing what’s happening. Fun fact - they can see and hear everything that happens in this room 24/7!

The bottom line is that Caroline’s team needs to capture 3-5 more “full” seizures (seizures she’s aware of) before they have what they need. The team explained that the depth electrodes can sometimes cause a slowing of seizure activity because they can cause inflammation (think barriers) in the brain’s channels. The team also needs to monitor her for at least one full day while she gets back on her medication. This helps inform a more holistic story about what’s happening to Caroline’s medicated and unmedicated brain. Even though all of this is not uncommon, Caroline is understandably feeling disappointed and discouraged.

We received a surprise visit this afternoon from Dr. Richardson’s PA, Ari. She has truly been so great throughout our experience with the surgical team. Ari has spent extensive time answering all of our questions from “will I have to shave my head?” to “can I wear headphones when you take the electrodes out?”. She assisted Dr. Richardson during Caroline’s surgery by managing the Rosa One, a fancy surgery-assisting technology. This thing is actually pretty cool. Click here if you want to see it in action but note - it does partially show an example SEEG procedure (on a fake person).

In addition to the lack of seizure activity, part of the reason that Caroline can’t go home until after the weekend is that Ari is only available on weekdays to remove the depth electrodes. Again, we were all excited by the possibility of a shorter stay but want to make sure everyone has what they need to help make March’s surgery a success. There will be another surgical conference in two weeks where all involved parties (i.e. epileptologist, surgical team, PAs, fellows, etc.) will review the SEEG findings and determine the best plan of action for surgery #2.

It may seem like an odd request but… everyone cross their fingers and toes that Caroline has a bunch of seizures tonight!!!

And in addition to alllllll of this, Caroline has also opted in to help four different research teams. She participates in multiple tests each day to help pay it forward for future epilepsy patients. Is anyone surprised?

Now for some positive stuff.

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With a huge sigh of relief, the nursing director also approved me to stay overnight with Caroline as many nights as we’d like. Again, this is not usually allowed but we must have won him over. We’ll take any wins we can get!

In lieu of morning poems, I read her some Harry Potter to start the day (The Globet of Fire, of course). She promised to ignore my pronunciation and I promised not to do any accents. Jokes on her, I’m terrific at bringing stories to life IRL (ask my siblings).

We’ve had two great nurses back-to-back. The night nurse was compassionate, thoughtful, and quiet (fantastic for an overnight shift). We also had the BEST day nurse today, y’all. She was incredibly kind, funny, competent, quick, and relatable. We wish she could be our nurse every day but she isn’t back until Monday. We brought the nurses baskets of goodies and they were a HUGE hit. We’re actively working to restock them before the weekend. We’re starting to learn many of the nurse’s names and I always chat with them when I walk by.

We were again joined by the Cormier fam - Mary, Alan & Katie. They are rockstars and have helped with anything we need. From bringing fresh sets of sheets, to getting us breakfast (and everything in between) - we’re lucky to have such a solid team here with us.

Caroline has continued watching and reading all of the love from you guys. There were many giggles today.

Now that we know that Caroline isn’t coming home tomorrow, we officially welcomed our first visitor, Dina! Like the thoughtful mastermind she is, Dina showed up with a personalized Cameo video from Ashley Gavin, one of our favorite comedians. The three of us were supposed to attend her show this month but we aren’t sure if it’s possible (yet!). Naturally, Caroline was floored and so excited.

With everyone’s spirits on the rise, Dina and I toasted Caroline’s bravery and resilience with a glass (hospital cup) of wine. They might kill me for including this but it’s too good not to share. Mary and Alan got me a bottle of wine today, chilled it in a CVS bag full of ice from their hotel, bought a water bottle, cleaned said water bottle, and then covertly brought me chilled wine to the hospital. When I said they would do anything we needed… (if you work at MGH and are reading this, I’m just kidding).

Sending our love from MGH.

Love, Nat