January 17

A note from Nat

It’s officially been 24ish hours since Caroline’s surgery finished. Spoiler alert! It went perfectly.

Caroline’s surgeon, Dr. Richardson, said that there wasn’t a single complication and everything went smoothly. In fact, they detected brain activity during the surgery and were able to place additional electrodes in that area (this will be important later). The surgical team even played Noah Kahan while they prepped her in the OR. We’re big fans of Dr. Richardson.

After a day of hospital oatmeal and Diet Coke, we (me, Mary, Alan & Katie) finally got to see Caroline post-recovery. Once she was in her room, it took an additional two hours to place the regular scalp EEG electrodes. Her team worked quickly and with great care - we’re also big fans of them. Caroline is now rocking a gauze head wrap with tail-like cords that collect in a travel pet carrier bag. Yes, you read that correctly. Between the depth electrodes and the scalp electrodes, the epilepsy team is able to monitor 250+ channels of brain activity.

Once she was a little more settled, we were able to transform her sterile room into a Caroline-approved oasis - including motivational signs, (fake) candles, pictures of Oakley, a lavender-scented air diffuser, and alllllll the blankets. You know, the essentials.

Caroline’s first night was definitely a transition. Luckily, the nursing director allowed me to stay over with her (technically against policy). Her electrodes/head wrap are extremely heavy and the carrier bag takes up a good chunk of her bed. She was absolutely exhausted and didn’t feel well as the anesthesia wore off.

However, morale is definitely better today! Despite the circumstances, Caroline isn’t experiencing an unbearable amount of pain. We have a great care team and an excellent day nurse who are helping manage all the things. She is hydrated, eating, and even cracking a joke or two. Caroline has also started watching some of the videos and reading the notes people have sent. As I anticipated, they are majorly lifting her spirits and making her smile. Thank you to everyone who sent me something to share with her!

Circling back to the additional electrodes - over the last 24 hours, the Epilepsy Monitoring Team has detected multiple seizures that occurred so deep in Caroline’s brain, that she didn’t even know they were happening. Without this initial surgery and the depth electrodes, it’s likely that these seizures would’ve continued to go undetected. The team already has a lot of data after the first day and feels optimistic that it will continue. This finding will likely shorten Caroline’s stay at MGH and she could be discharged by the weekend!

Additionally, the brain activity and seizures are mostly localized to one area of the brain - the insula. This aligns with what her epileptologist originally suspected a few years ago. If the epilepsy + surgery teams review and validate this, it will significantly help make her second surgery a success.

Stay tuned! We will continue updating everyone as she continues her stay at MGH and into her recovery! Thank you so much for the kind words of love and encouragement - we all appreciate them more than you know.

Love, Natalie