Pierce and I spent Tuesday night in St. Louis at the children’s hospital. They did a 24 hour EEG, while we played SkipBo and watched more tv than we normally watch in many months. We napped and wished the boring hours away. He had one seizure in very typical style, in his sleep, and I found myself actually thankful for it, that our time wasn’t for naught.
The next morning they came in with their report. He’d had the one recognized seizure and four more that we couldn’t recognize as much more than stirring in his sleep. Furthermore, each one lasts a minute visibly and about two minutes in his brain.
Talk about a blow. It’s worse than we ever knew. So now we’re adjusting meds, bracing ourselves for more EEG’s in the future because we can’t know that the meds are working by just eliminating visible seizures. I do feel like the doctor wasn’t necessarily giving me credit for what I’d been saying, and now we have clear evidence of the changes we need to make. It was really hard to hear their report. But we’re home, we have a plan going forward, and more information regarding where seizures start and what to expect from that.
I’m thankful that the time wasn’t wasted. We learned a lot. But I can’t help but wish it all were just a bad dream.