Category: Surgery

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.

One of Cam’s doctors came in this morning to update us. It seems he is having a ton of sub-clinical events (events we can see if the brain but don’t manifest themselves physically). These events are all coming from the right insula, which is the area we laser-ablated last time but either just didn’t get enough of the area.

Because we haven’t seen physical seizures yet, it’s too early to know if this is the area to attack or not. They want to see if the physical events line up or not.

Surgically, we have options if we do decide to re-attack the insula. Another laser surgery is probably the cleanest precision way to do it. We could do RNS device which is an implant that monitors the area and detects seizure activity and tries to counter it. Resection is also an option, but may be too large of an option if the area really is as small as the insula. But we need more data first.

It doesn’t help that the nurse had to check on him often, but Cameron had a fairly rough but good sleep. He woke up good around 4:30.

The morphine seemed to help but he still woke up with head pain. Just had some cereal and is watching a movie and starting to twiddle with his iPad. We will see how everything goes this morning.

I’ll update when the docs make their round this morning.

Cam was feeling a little hungry so i ordered some pasta. He ate a little but his head pain was too great for him to eat much. He also finally had his first need to pee post surgery.

So, we did the pee thing, decided to get him out of his gown and into PJs, and then scooted him in his bed and it was too much for him. He got nauseous and started to throw up. Luckily Dad was there to catch it all. That’s something I hadn’t done in awhile.

He is resting now. We started morphine to try and control the pain and he will zofran some for the nausea. He’s tired, so it’s probably all for tonight. We will see how he feels after the meds.

I kid because he has pain, but at least I know he is back to usual.

He finally woke up enough to want his glasses on, so the EEG techs had to come cut holes in his headdress to allow them on. He is still in pain, so we just got him some stronger meds. He’s had some applesauce and is awaiting his pasta from room service. Video games are finally being had.

It’s been a long day but it seems like we are out the surgery woods for now and just in to the long term monitoring and waiting.

The staff here, especially this nurse, has been downright amazing. In some ways I never want to see this place again, but I’ll be sad when he ages out and has to go to a ‘normal’ hospital.