Month: July 2019

We made it to Phoenix and are getting ready to have a special dinner at Melting Pot. We have another 5AM check-in, so we came down early.

We will start making the trek north as soon as we can!

He’s back to normal. Once he woke for good, he’s been eating and drinking like crazy. If we can just get him to poop, he’d be solid.

We are looking to get discharged tomorrow at some point and then we’ll head home and figure out the post-hospital directions. Then we turn around Wednesday afternoon and do it all again. But at least this next stay is just a 24-hour turnaround.

I probably won’t post again here until late Wednesday when we re-settled down in Phoenix.

Thanks to everyone for all the thoughts, prayers, wishes, etc. It’s been great for Mandy and I to have such a great network of friends to help us through all of this.

He looks weird with hair visible.

He is just sleeping and sleeping. We are letting him rest for now.

Ok, easy-peasy. He’s done and waking up in Post-Op. We will see him in the room when he is moved.

Dr. Adelson said his hair color and texture is so similar to the stitching that they had to put a special black stitch near the spot when they will go back in for his laser ablation.

Cam was just transported down to Pre-Op and we talked to the surgeon. Sounds like a quick in and out, 20-30 minutes. Infection and bleeding are minimal risks, but they usually see those more and implant versus explant.

We will update as we hear back from the doc in the post-op consult.

Looks like Cameron is tentative schedule for 2:30PM surgery to remove the electrodes. He is fourth on Dr. Adelson dance card this morning, so that time can be fluid depending on how those previous cases go.

Not sure if he’ll come back to PEMU for recovery or whether he’ll go to ICU to be watched.

That’s it for now.

Mandy took Mom to Pei Wei for dinner and they brought me back something and got some fortune cookies for the boys and I.

Look at what Cameron’s first fortune cookie gave him:

So, in the past 24 hours, they didn’t see any major activity, but think they may have observed a very small partial event. So nothing there.

However, we just spoke to Cam’s neurologist and we have a plan forward. After consulting with the neurology team, it sounds like everyone is agreement that this insula area is the one to go after, so he’ll have his probes removed tomorrow afternoon at some point. Sounds like the surgeon has a ton of cases that day, so the likelihood is that we might be able to leave late Saturday or maybe Sunday.

Then they may have availability some time late next week to do the surgery. More or less a 24-hour sort of deal from that standpoint so we will see about that.

It will be this laser surgery, so again the best case from a complication standpoint. It’s a small hole and heals fast.

I’m overjoyed that this is really the best case for Cameron. This doesn’t mean he is out of the woods by any case. We have to start looking at 6-12 months seizure freedom before we can really start to get excited, but this feels like the next step of the plan.

So, Cam’s IV from surgery was slipping and not great today. When he got transferred to PEMU, the first nurse was able to fiddle with, but the night nurse came in at midnight and was concerned about so she tried to re-do it. Two bad sticks later and a Cameron was pretty upset.

He had slept through the first, but didn’t through the second and hot irritated. After consulting with nursing supervisor, they decided to get the IV team involved because they don’t want to stick patients more than three times if possible.

The first ordeal took over an hour and Cam went back to sleep pretty easy. Dan on the other hand was wide awake until nearly three, so he played on his Switch until then. Right as he got tired and started to go to sleep, the IV team showed up and got it set.

Needless to say, I’m pretty tired. I’m not upset because I know that this sort of thing isn’t easy. When I went under for my kidney stone removal, the nurse got mad when her IV didn’t take. I’m not going to get mad because they still have to stick me again. Hopefully Cam will go back to sleep and maybe I can as well.