We can’t thank everyone enough for all the thoughts and how many of you have reached out and offered to help. You are amazing. But I have to tell you, nothing is more amazing than how brave and strong our baby girl is.
So let’s start from the beginning….
Reese had four seizures Sunday, and another four Monday. We have gotten used to some spells in a row, and at first we weren’t concerned. But two things changed this time… 1. she couldn’t stay stable and awake long enough to eat or drink anything. 2. We gave her the rescue med and it didn’t help as it should have.
So we agreed if the next seizure was within 12 hours of her last, we were heading to the hospital.
Tuesday morning she was only awake about 5 minutes when she seized and it didn’t take any more thinking for me — we started packing to head downtown. After insisting to our neuro’s nurse that we were coming no matter what, she agreed we would get our EEG when we arrived. “They would squeeze us in.”
The goal of the EEG is to capture a seizure both on video and with the computer that is tracking the brain’s activity. So it’s not great when you have a seizure 5 minutes before you get to the EEG, kind of defeats the point. We were crushed. Luckily we got the veteran technician who managed to let us stay past our 30 minute block, and after 1.5 hours we got what we had come for.
The picture was so clear to the nuero doctor that we had a different type of seizure happening than he had thought that it meant he was ready to try a different approach. That, plus Reese not eating, influenced him to admit us to the hospital right then.
So, we spent Tuesday night just getting checked in, hooked up, and trying to stabilize her seizures and her fluids.Good news/bad news — she had a seizure right in front of the nuero dr, while hooked up to the monitors, Yay! More data.
Total for Tuesday? Five. Two out of five recorded was making it a pretty good day, if you can try to find the positive side.
OK With Change 