These last four days have kind of sucked. We made it over a year, but Thursday Ella had her first seizure since last October. She was at school with her nurse when it happened and when I got the news, my heart dropped and my anxiety went through the roof.

Let me preface this by saying, she’s okay. She had the person she needed with her when it happened, and although it took her two days to fully recover, she is now back at her baseline. This seizure looked different though. It lasted two full minutes. That’s new for Ella. Most of her other seizures have come in clusters and not one of them has lasted that long. This time her heart rate dropped significantly. That is also something we have not seen before. In the past, her oxygen has always been our main concern. This time it was fine. Despite having been through this before, it still feels as scary as the first time.

After I got the full details of what happened, I immediately reached out to Ella’s neurologist. He always wants to be updated on any possible, or confirmed, seizure activity and particularly likes to speak with the person who witnessed it. He was concerned, but not concerned enough to make any medication changes. Being that she was recovering from RSV, he thought that might have been a factor. He said he has seen a lot of breakthrough seizures in kids with RSV this season. We have an appointment to see him at the end of the month and until then we were told to monitor her and keep him in the loop. We will discuss a new plan,if needed, when we go and see him in person.

It took Ella two days to fully recover but my recovery time is still TBD. I know everything was fine. I know that her amazing nurse was right there and on top of her care. I know that there was absolutely nothing else that could have been done. My mind is telling me it’s fine. We made it through and Ella’s doing great. My heart is feeling something completely different. My heart is telling me to put her in a bubble. To never let her leave the house so if something happens I can be right there with her. I know that’s not the answer.

On Thursday our clock reset. We are no longer over a year out from a seizure but rather four days. It was a good run. I want to say I wasn’t foolish enough to think we would never see one again, but part of me thinks I was. If nothing else, it was a good reminder that you can’t get too comfortable when you have a medically complex child.

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