Month: May 2021

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.

Dr. Adelson came by and did his last post-op check in. Said again that he was happy with how everything went.

He’s still trying to sleep. He always comes out of anesthesia very tired. He’s taking some Tylenol and a little water to see how he is feeling.

I’ve been busy and missed a few things. Cam came into recovery around 1PM. They then whisked him more or less straight to his monitoring room instead of a long PICU stay like last time (~24 hours).

I was out helping my Mom get some food in the hotel room and stuff while we thought Mandy was the only person in recovery. She got to talk to him a bit but then he wanted to sleep and recover from being tired.

Mandy is getting ready to head back and my Mom has gotten permission to be in Cam’s room with me, so that’s a huge relief.

At this point, it’s just waiting for him to wake and try some food.

Just had the consult with Dr. Adelson. Procedure went well in his opinion. They were able to place 10 leads into the right side of his brain. He is off to a CT scan to make sure there is no bleeding and then he’ll be off to recovery.

We are grabbing a quick lunch while we wait. There can only be one person in recovery, so Mandy will go up first until she is happy with Cam‘s progress and then she will leave for Flagstaff. I’ll stay here until he gets out of recovery and then when he gets into his monitoring room, my Mom can help me take turns watching him.

Just got a note from the nurse that the procedure is going well and is almost complete. We should be hearing from the surgeon in awhile.

Mandy and I just left him as his surgical nurse wheeled his bed back to the op room. Now we wait…

We will get periodic updates as time goes on. Mandy has left to get some breakfast and then I’ll go when she gets back.