And here we are...

July 15, 2012 Sunday

So we have been home from the hospital for 4 days now. What happened during our stay?...We were transported via ambulance from the hospital to a facility in Sacramento. The reason? Well, apparently the hospital only had a "Level 1" type MRI machine but Dr. Asaikar was confident in what image he  needed speciffically and that MRI would not work we needed a "Level 2" so away we went. God's grace through this is amazing. We expected the MRI to last AT MOST an hour. So imagine my angst when we were approaching 1.5 hours. I guess JUST has they pulled her from out of the MRI he came in and asked to see the images. He found what he says he knew was there, a spot that even the radiology tech had not seen. So back into the MRI she went so that they could get more detailed specific images of that area. Back to the hospital we went. I am grateful to the two drivers we had that waited with me in the waiting room and the nurse that had to accompinan us on the trip not only did they take excellent care of my baby but they helped this momma not jump out of her skin!

Dr. Asaikar came in that evening and pulled us from the room to show us her images. (Another provision of God's grace is my sister happened to be there so she stayed in the room with Raegan). Let me tell you if you have never seen MRI images they are pretty narley at times. They were images of her head/brain sliced into 1/14 of a cm. I must say that even though I know what was likely coming because of previous conversations and thoughts nothing prepared me for the moment he stopped on "that image". The one where he says "She this here, it shouldn't look like that". Frontal Cortical Dysplasia I have heard this term used before and knew it's meaning just didn't want it attached to my daughter. 

Imagine if you will say an 8 layer cake cut in half with frosting in between each layer, this will be our brain...(so sorry I'm not scientific enough) ;)  Anyway, as our brain forms in utero it develops in layers that should be very nice and straight. This will ensure our electrical currents run nice and smooth and even. Well, with FCD it would be like 5 of those layers having a knife drawn through them causing the layers to combine and jumble. This bundle would now be your lesion.

So now we know the "culprit". What do we do with it? Medication is our first stop since we need to control the seizures as wait for our next step. She has begun a medication called Depakote. So far she has tolerated it fine with the only side effect I have seen is about 2 hrs after taking it she has an EXTREME burst of energy that is off the charts and lasts for about an hour. Has it controlled her seizures? Not quite. We have seen episodes every day since we have been home. Do you know how exhausting it is to WATCH someone. I mean literally spend your entire day looking for something/anything? Even the slightest tremble sends me in to stare down mode and then the counting begins. How many minutes does it last and how many twitches does she have.

The Dr has now referred us to a specialist at UCSF to begin the possible next step which would be removal of the lesion. Yeah I was TOTALLY NOT ready for the suggestion from him. A process that I'm not quite ready to deal with. So I wait for the call from Dr. Sullivan. Dr Asaikar personally talked to him Friday and now we wait...and as we know that is just a tad hard on my end.

If you made it through all that rambling, THANK YOU. I find the best therapy for me is talking or the next best thing blogging. I hope you can bear with me as we journey through this.