Fontan Day 15:

1:25 PM After our eventful morning yesterday, we felt confident that we would meet with neurology today, possibly have another 24 hour EEG on Mary Clare, get an official game plan together for her seizures and be on our way.  In fact, we had already begun her “sprinkle” seizure medication routine last night.  Depakote, her seizure medicine, comes in a pill.  I open the pill and use the sprinkles on ice cream, icing, chocolate syrup, anything really, twice a day.   We were to begin a low dose morning and night for two weeks, review,  and continue to up her dose every two weeks until her appropriate therapeutic dose was given regularly.

After a long night of feeling Mary Clare toss and turn, I finally asked the nurse to give her oxycodone for pain.  The seizure yesterday seemed to have her chest and back very sore.  She woke up rather early around 7:30 AM, which is unusual for her and was very talkative and in a great mood.  I was chatting with her nurse and MC got down off of her bed to come sit in my lap.  I heard her make a “Uh” with a tick.  (Something I’ve been noticing and noting for about two months now.)  I mentioned it to her nurse, just to verify that she saw it as well, and immediately Mary Clare began to seize again.  My heart dropped, but I slowly carried her stiff and jerking body back to her bed and watched her writhe, gasp and turn blue once again.

I have seen her have grand mal seizures four times now. I wouldn’t say that I’m getting used to seeing her tiny body have a seizure, but I react very differently from the very first time she had one.  I know when she is seizing and although my mind is screaming and panicking, my body does exactly what needs to be done.  As I sit and watch what no mother should ever see, I know I’m being held.  Watching her have a seizure is heinous, to be honest.  There is absolutely nothing you can do other than watch and keep her safe.  I just hold her head and talk to her.  I don’t know if she hears me.  Probably not, but just in case, I want her to know I’m there with her.  When all is said and done and the eternal two minutes or so is over, I look back and know that there is no way I could do this alone.  Just as I am there with her, He is there with us.  Mel and I both certainly have a peace throughout it all  that even astonishes us.

We met at length with her cardiology team and Dr. Turner, our neurologist, and his team.  We feel confident that they have the best “game plan” in place.  (We just had to jump start it because she had two seizures within 24 hours.) Her emergency plan will be adjusted because of her special heart, but we will continue on with her original med plan.  Mary Clare is being given her full dose of Depakote through IV now and we will continue with her daily dose “sprinkles” twice a day.  We have been assured that her heart can handle this and from her heart’s point of view, all is well.  How amazing.

8 Comments