The Next Day

The morning came and we arrived at Blank at 11am, Grace was hooked up to the Video EEG. She was hooked up and for the first hour or so and we had to mark each time she has a spasm by clicking a button hooked to the EEG system. It almost felt like we were hurting her each time we had to push the button. It was like the trigger used on morphine drips for patients in extreme pain.

We were waiting for Dr. Kabani and went to get something to eat in the cafeteria. When we got back Kabani was there along with a couple residents; teaching hospitals are a great thing and it is awesome that Grace’s condition was able to be used by these Dr’s in training but it does get frustrating to answer the same questions over and over again. You start to wonder if they ever read charts! Perhaps this is part of the learning process.

The crowd of doctors and nurses were gathered around Grace’s bed watching her, there was no room for us. We sat and did the only thing we could do and ate our sandwiches which felt all so weird but it was already 2pm and we needed to eat if we were going to get through this day. They were able to determine that she was defiantly having seizures. They gave Grace a shot of Vitamin B6 this actually relieves seizures in 1% of people with seizures, it didn’t work for Grace.

Kabani managed to schedule Grace’s MRI later in the day and we would be having a spinal tap the next day. The purpose of these two tests was to determine what was causing the seizures.

They gave Grace anesthesia through her IV and after she was out wheeled her down to the MRI. We sat in the waiting room trying to grasp what was coming next.

We met with Dr. Kabani that night and about two hours of debriefing we knew that Grace had Epilepsy. The MRI had shown that Grace’s brain hadn’t formed correctly. Of concern were the corpus callosum and the thickness of the crevices in her frontal part of the brain. What we didn’t know was if what she was a rare and life threatening form of Epilepsy or just Epilepsy. We decided in those two hours to drive to St. Paul, MN the next day in order for Grace to see a Pediatric Epilepsy Specialist.