Month: May 2021

Caught him with another big partial right as he went to sleep. Might have been just 5 minutes from the time he went to bed to when I saw him start it.

He’s fine and back asleep again. Just hope this activity can die back down again as we wrap up our stay here.

No need major news. Surgeon confirmed his thoughts about the laser surgery and thinks they will be able to get him in around 4 weeks or so. Just don’t want to conflict with his birthday or my helping at church camp.

Removal is still scheduled for tomorrow afternoon and he could be discharged after breakfast.

Grandma is also scheduled to leave Phoenix early afternoon so the timing is super.

Cameron’s team have reviewed the data in their meeting today and have come together with a consensus path forward.

All of these events have lined with two areas in his brain, one in his insula where he previous surgery was and one a little more forward in his head that showed activity in one of the events.

Because of this consensus and the relatively safety of burning there areas without much last effects to Cam physically, that is their suggestion to do.

We don’t know when a surgery will be scheduled but it may be like 6 weeks or so. They want him to heal from this and remove any infection worries.

When Dr. Adelson comes by later, we will get a feel for timing.

One of the docs from neurosurgery just came by on behalf on Cam’s surgeon to confirm he is getting the probes removed tomorrow afternoon.

We will get more details later today but it does look like they will likely recommend another ablation procedure. I’ll post more details as we know more.

Looks like everything went smoothly last night. Eager to hear from the docs this afternoon.

Close to dinner time, Cam had a big partial. I had assumed it was going to break through but it stopped after about 20 seconds.

He’s fine and his usual grumpy self afterward. I’m going to try to keep him awake for a couple of more hours if I can.

All these events are coming from the same area, which is great to confirm. The doctor who is reviewing the results is confident another laser surgery to his insula area should work well. Surgeon is still confident probe removal will be easy and quick. It’s scheduled for Tuesday afternoon at some point, depends on the surgeries beforehand for timing. Then he’ll have to be monitored for 24 hours and then should be released.

While eating some cereal, Cam went into another breakthrough event, his third of the stay, and made quite a mess. We will clean him up once he wakes up more and is able to deal with us cleaning him.

For our fourth time being in this hospital being monitored, Cam is really pulling out all the stops.

I was watching one of the Avengers movies and he was playing in his Switch when I looked up and say the game was running but he wasn’t controlling it, a telltale sign he checked out.

This shows all three types of seizure he has, the full blown breakthrough that caused the convulsions, the partials where he checks out for 10-30 seconds, and the ones that are going on in his brains but not showing outwardly.

He usually gets tired after three, so he immediately decided to go to bed, which is fine with me.

He honestly has his need day so far with no real pain or itching and he tolerated all the help he needed to do stuff despite having to get re-stuck for an IV.

I got this is the key to get all the data we need to kick this dang condition once and for all.

Docs were pleased with seizure data. More or less lines up with the previous seizure even though the event wasn’t as intense as the previous one.

Sounds like the doctor wants to do some cortical stimulation, using the probes implanted to send signals instead of receiving them, in order to test those areas of the brain to see if surgery would affect things like motor movement, etc. Not sure if we’ll do that today or tomorrow, depends on Cam’s disposition which is fairly sour this morning.

Surgeon said we will monitor for more seizures over the weekend and it should like we will have a on Monday evening about the path forward, presumably about surgical options.

He is awake now and used the bathroom and had cereal so that is something.