Month: May 2021

I woke up about an hour ago and Cam was still asleep, which has been the norm the whole stay.

Around 6:35 the second seizure started as heard some movement coming from the bed.

Hopefully this is confirmatory data for his team.

Sounds like Cam will be here for the full weekend. No other activity today and the surgeon says unless he has activity over the weekend that they will meet Monday to decide to go forward with removal Tuesday or keep them in longer to get confirmatory data.

Before lunch, Cam got his head wrap re-done which has alleviated some of his discomfort. I got to see what the probes looked like without the wrap and got a little put off. Seeing that stuff up close was fun to look at from a Dad point of view.

We also changed his close and did an antiseptic wipe down which Cam can’t stand.

The doc reviewed the overnight results and they saw another event that once again correlates with the previous events which is positive news. Helps us know we’ve really dialed this in. They’d like one my physical event to really verify things, so we will see what we can do.

Nothing happened last night, at least that I am aware of. Cam slept sort of fitfully last night as I did hear a lot of adjusting. He’s gone back to sleep for now, but I don’t know how much more he’ll sleep.

The irritation and itching of everything is becoming the main issue now. He gets very upset at me and grandma and the medicine only helps a little. Here is hoping today is a bit more tolerable for him.

No real news today. Cam is getting more and more frustrated with the head wrap, which is understandable. Has itching too but we ordered some meds to help with that. Just trying to distract him with games and TV as much as we can.

The doctor came in and gave me the breakdown from last night. Sounds like the seizure was captured on two of the leads that are in the same neighborhood, around the insula where his previous surgery was. He says it’s a good candidate for the laser surgery again and would be his recommendation if Cam were his patient/child. A RNS device could be used as well, but he said you could always do one later too.

They still want to try and capture some more events, so they are keeping him off meds for now.

Also, his preclinical seizures have stopped. He says often times the probes cause activity when implanted but they calm down after.

Cam is still pretty sleepy, so I’m letting him rest and not worrying about breakfast right now.

Cam is still sleeping after his big event. I heard the nurse doing her neuro assessment a few times last night and he seemed fine during that time, but he is otherwise still resting.

Nurse shift change is starting and the docs will start making their rounds so it’s hopeful to hear about his event and what it may all mean.

After nearly five years of dreading the possibility of a big seizure every single day, tonight I can report a joyous seizure, if you can call it that.

Around 9PM, Cam petered out and went to bed. He’d been up since 4:30, so it’s not surprising. About 10 minutes later, I heard some adjusting and saw the look of his head turning into what I thought was a partial seizure. I grabbed the alarm to alert the nurses and by the time the first two got there, the event progressed into a full blown clonic/tonic seizure.

I’m in tears writing this.

Hopefully this data tells his teams something, anything, to either confirm the subclinical data they have, or helped highlighted other area(s) of interest. I’ll be eager to see what the docs say in the morning.

After about an hour, he’s finally back asleep. He had a little pain, but not a lot. His nurse and I were able to position him in his bed well enough to prevent his shoulder from having too many issues. He did wet himself a bit, but we were able to change him pretty easily as well.

Sounds like not much happened during my nap which is a mixed blessing. We’d love to see something like a partial at this point, especially given he has been having so much in the weeks. Dinner is on the way and I’m sure more video games tonight.

Cam has spent most of the morning either TV or playing on his phone. He had a headache when he woke but it has gradually gotten better.

A small lunch was just had and some more pain meds as his jaw is starting to hurt, which isn’t uncommon in these procedures either. Hopefully he will take a nap soon.

I’m eating myself and will head back to our hotel room to take a long nap myself. My Mom is watching Cameron now so I can rest and clean up.