The Stars at Night are Big & Bright

We made it to Texas for our 2nd opinion finally! It has definitely been a long time in coming. Not a great time either. We’ve narrowly avoided emergency admissions and tried to stay stable enough to keep Max in school and doing the things he enjoys. We are so grateful to be here and cautiously optimistic to see what the plan is. 

Max had his very first airplane ride Saturday and was nervous. He ended up loving it and went from uncertainty to “Everything looks so small from up here!” “ We’re on top of the world!” very quickly. We did give him a preventative dose of one of his medications we use for clustering seizures with his doctor’s blessing about an hour before the flight. Matt and I were concerned with him potentially having a bigger seizure up in the air with how unstable he’s been. That seemed to work well and we arrived without incident (though I can’t say the same for our poor luggage). We retrieved our suitcases, got our car and headed to the hotel. The rodeo was in Houston for two more days and not far from our hotel with Dierks Bentley and George Strait playing the last 2 nights. Traffic was wild. 

It’s definitely a weird place to be in mentally as a parent of a kiddo with Epilepsy. You are constantly trying to stave off seizures. You maintain steadfast routines, ensure you never miss meds, get enough sleep, miss things, give up things, and do anything to try to figure out triggers to stave them off. Then you get checked into the epilepsy monitoring unit for tests like this and WANT those same seizures you’ve been avoiding to come in droves.  You want not just one, but all the kinds you’ve been seeing to show up. You want to see what they’re doing, track those patterns and learn everything you can.

Max had a Covid test Sunday morning and we had some downtime to try to locate him some boots and a hat. He found the perfect hat but boots will wait til after our stay. Test was negative and he was cleared to get admitted Monday. We arrived at Texas Children’s Hospital bright and early Monday. Max got checked in and wired up for a week long video EEG study (vEEG). We met with the physician’s assistant to tell her a history of Max’s seizures/ epilepsy and show her some videos of what they have been looking like. We talked game plan for the week. We were able to meet with one of the Neuro docs and she let us know one of our plans was to get a SPECT done both during a seizure (ictal), after a seizure (post-ictal) and also when he’s not having one to establish a baseline of his typical brain activity. The doctor gave us a heads up that the SPECT was timing sensitive and not to panic if we didn’t get it right away. They only have the person who does the radioactive injection during certain hours Tuesday-Friday. The injection needs to be primed and ready to go into the IV as soon as the seizure starts so that the dye can get to where it needs to and then the scan can give the best data possible. She said we’d have the week so not to worry if it took a bit. If we started to get close to the end of the week, she said we could always lower meds or do sleep deprivation to bring on seizures. I said that with how unstable we’ve been , we might be ok. If there’s one thing we can count on, it’s seizures to show up to the party.

Max’s brain did not disappoint.  We had a wild morning! The gentleman who runs the SPECT injection came in to introduce himself and explain in more detail what his role would be. While he was talking to us, a seizure showed up with a BANG! He didn’t even have the injection with him. He had to run to another building to  get it.  But made it back in time and we caught a good cluster and they were able to get good imaging on it. Max was a champ and laid completely still for the scan without sedation. He did keep having aftershocks so they gave him some Versed to calm things down. That made him super loopy so I hand fed him some bacon and pancakes while he watched weird Minecraft videos that were all well earned.

In typical Max fashion, he is charming everyone he meets. One of the Child Life specialists came by and adored him and his manners even sedated. Then she heard me speak  and said, “WHERE are y’all from?” I told her near Chicago and asked her what gave us away? She said as soon as I spoke she could tell🤣

 Everyone here has been incredibly attentive and kind. We’re under constant video/ audio surveillance with the vEEG so it’s a little disconcerting when Matt and I are talking about where to find coffee and the disembodied voice comes from the “bubble” and tells us how to find it. The doctor rounded on us and said they are getting some beautiful data so that makes us so hopeful and I know we’re in the right place for right now. For now, the plan is to be on seizure watch and catch as many as we can. They will do some more SPECT tests as well. For now, we’re grateful to be here and hopeful to come up with something better for the kid who has been through hell and still gives his very best.