Month: July 2019

So, I’be finally been able to get back up to the hospital and Mandy and Mom were able to fill me in on what the doctors think.

He has not had any more events since the first two that we say when he first came out of surgery and was recovering from anesthesia. However, those two events did seem to start in an area of his right side called the insula and then the activity moved more to the frontal lobes. In addition, they noted that the movement we see was more a part of that frontal lobe activity and not the insula part.

What this means is that this right insula could be an area that would be appropriate to treat with the laser ablation. This would be the least invasive option where they would basically do another small hole in the brain, insert the laser probe to the correct location and depth and then neutralize what needs to be taken care of. They made it sound like he’d be able to go home the day after this sort of procedure.

If this approach doesn’t work, then we could be talking about removing more of that right frontal lobe which is more invasive, potentially opening up a flap in his skull and would be a much longer recovery and post-procedure therapy.

So they have removed his medication for now in hopes of trigger a little more seizure activity tonight and tomorrow. If that happens, they could take him in Friday to remove the electrodes. Otherwise, we wait for Tuesday.

As far as timing goes for a potential surgery on this insula, it’s all dependent on scheduling the MRI for a prolonged period of time, which can be a challenge. If they are able to remove electrodes Friday/Tuesday, they may have to wait on the surgery for some period of time before being able to line things up.

The part that gives me the greatest comfort is that originally, the surgeons were not going to put electrodes near the insula. It sounds that as the original procedure moved forward, that decision was made. I’d like to think that was God’s hand directing them to what was needed. I’m not going to get all biblical here, but it’s hard to not hear that and think that with everyone out there thinking and praying for him that those words are being answered in this way at this time.

Pray for more activity over the next 24 hours. It’d be awesome to get that confirmatory data sooner that later, for all of us.

So, I’ll left the hospital around 11AM to come back to the McD House to take some long need napping (two bad nights of sleep will do that). Ended up in bed around and noon and absolutely crashed for a couple of hours. I still feel tired, but it was a good patch of sleep.

While I was gone, it sounds like Mandy has some news. First, Cameron got moved to the PEMU, which means we was good enough to leave ICU and progress to the next step. Then, Mandy said both doctors came by the room and talked about next steps and evidently they’ve hatched a plan.

But, before we go back up the hospital, Austin and I are hungry. The ladies had lunch at the hospital, so we’re in between meals here. Austin is craving Fuddrucker’s of all things, so there is one about 10 miles from here that we’ll go have an early dinner and then we’ll head up and talk to Mandy.

So, Cameron certainly feels more normal now. Still pretty sore for the surgerical sites, but overall feels back to normal from a personality standpoint. He (and I) slept as well as he could considering he was being woken every hour or so. Woke around 6 to take medications and has been up since.

Neurosurgeon came to check on him and said things were looking fine. I think we’ll have one more CT this morning to confirm no bleeding before he can moved up to the Pediatric Monitoring Unit (PEMU) where he’ll spend the rest of the stay.

He was able to use the bathroom this morning, so he had the fun of peeing in the bed (we got to use the capture thing, but still, he was in bed and peed). Bear with the humor… I get some license here.

Rest of the morning shift of docs and nurse have been checking in. He still ha a pretty consistent level of pain that his pain medication hasn’t been controlling well. Everyone is making is clear they are trying to balance safety concerns and the level of medication, which I understand. Cam has breakfast coming soon, so hopefully that will help.

We’ll sit patiently while we wait for the day to progress and get him upstairs to PEMU.

He’s complaint about pain, but fell asleep around 9 with no outward signs, certainly not the moaning and clutching of his head he had before. He got morphine, so I really think that took the edge off for now. He’s also got some oxycodone on standby if he needs it.

Hopefully, the hourly neuro checks that are mandatory in ICU won’t bother him too much.

I’m off to bed. Hopefully I can get enough rest between now and when the rest of the family comes up to relieve me. It’s be a trying and stressful 48 hours, but at least we are on the other side of it and he seems to be on track.

Thank you to everyone who has reached out to me and/or Mandy today. It’s heartwarming to hear all the prayers, wishes and other good thoughts we’ve had. We certainly feel uplifted by all of it.

So, around 2 or so, he woke up for good, which is good. Everything is just moving slow. He started off with a little water, progressed to a few crackers and just finished off with some nachos, beans and rice. His stomach is handling the food well, so that’s a good sign.

All of his neuro testing is fine. No loss of feeling or weakness anywhere. Memory seems fine as well. Just a lot of pain. His head and jaw are sore. It doesn’t seem to be at the surgery site specifically, just pain all over his head.

He had one round of Tylenol already but it didn’t seem to put much of a dent in it, so we’ve asked for something a bit stronger.

Mandy is likely heading back to the Ronald McD House soon. I took my Mom and Austin back around 5 to let them rest and grab a few things so I can stay overnight with Cameron. I’m dead tired, but will try to stay awake as long as I can for Cam. He’s slept all day, so I don’t know if he’ll peter out soon, if whether he’ll party all night.

Seems like Cameron has already had a couple of minor seizures.

While he was waking, I thought I had seen what could have been a partial seizure. It was hard to tell because he was out of it and it was hard to tell what is what while he was fighting the anesthesia. But when his doctor came in, he told us that he has had two that were measured on the probes, which is good news.

We talked about things and decide to alter his medications a bit in order to try to increase his activity, so we’ll see what that does.

For awhile, he was awake and watching TV but it looks like he just went back to sleep.

I had written a post, but then it didn’t get published for some reason… weird.

Anyway, about two hours, we got word that Cameron was out of the OR and being sent to imaging for a CT to make sure there were no bleeding as a result of the probes.

Dr. Adelson, Cam’s surgeon and the Head of Neurosurgery, said the procedure went well. They implanted eight different electrodes, six on the right side of his brain, two on the left.

The plan for now is Cam will spend the next 24 hours in ICU. Right now, he’s having a hard time waking. I’m sure he is wiped out between the early start and the whole brain surgery as a whole. Mandy was pretty emotional seeing Cameron in the state he was in, but honestly he looked fine. I don’t think she really got to see Cameron during his previous monitoring stays and to me he doesn’t look much different than that. But with that said, her baby is her baby and she has every right to be emotional about it.

Tomorrow, he’ll be transferred up to the PEMU ward for monitoring. For now, the plan is that the electrodes will stay in for a week and he’s scheduled to have them removed next Tuesday. However, that can always change based on how this week’s monitoring goes. Monday, Cameron’s full team will review the data and his case as they’ll decide what the next path will be (could be surgery, could be more monitoring, etc.).

I’m getting ready to head back down to his ICU room. Sounds like he’s finally awake now, so I’ll go check him out.

Just had the consult with his surgeon and everything went as smoothly as planned. He had a total of 8 electrodes implants, 6 on his right side, 2 on the left, to tap into the areas they want to investigate.

As of now, the plan is to monitor all week. Monday afternoon, his data will be presented to his Epilepsy team’s conference and then the recommendations will be presented to us. The plan is still to have them removed in a week, but that all depends on how the week goes.

We’ve moved upstairs to the ICU waiting area. He’s getting a CT scan right now, just to make sure there isn’t any bleeding as a result of the surgery.

He’ll be in the ICU all day and if things go well, he’ll be moved to monitoring at some point tomorrow morning.

Just got a call from the OR that Cam is out of MRI and they are starting the procedure.

He’ll get a CT after and then will head to ICU after that. We’ll talk to the doctor post-procedure.

Still a couple of hours to go but at least we are at the next step.

We just sent Cameron to the MRI about 10 minutes ago. Sounds like he’ll go to the OR right after. He’ll be sedated for the whole thing.

Rest of the family is eating breakfast while I camp out in the waiting room and we will swap out when they are done.