And it starts....

So we went to start the study today for Lily. She will be involved in an 18 week study with a new med trying to get FDA approved. She is in this study b/c it targets her type of seizures.
It was a long morning, it did start blessed by the hospital coffee cart being empty when I walked up (with only 5 minutes left to my apt.) and I left the cart with a line of about 10 behind me. Coffee God knew this day needed that jump start.
We went right back at 9:30am, Andrew, Lily and myself sat in a conference room with our very New Yorker study nurse whom was a sweetheart. She wanted to make this as easy on us as possible, knowing it is a huge commitment and we all need to work together. We signed in blood our consent and Lily had to have her blood taken. While RN and Andrew took Lily to the lab I was left in this large conference room to myself to fill in the sheet about all the AED's Lily has taken and the approx. time she took them. Ok, there were 24 meds on this sheet, Lily had taken 16 of them! 16! Lily is 5. And Lily was on the same two for almost two years. That means in three years we went thru 16 meds before finding the right fit. My mind was a blurr. I was thinking well first hospitalization she had phenobarbital, of course I knew that one. But then on her third hospitalization at 8 weeks we added Depakote as well as Zonegran. Then I was a blur up until I knew when she was 13 months old and was diagnosed with Infantile Spasms (a total blow) and was on ACTH, daily injections given by her old maw. AWFUL time! Then blur again. I knew we started something new when Lily was (the most beautiful) a flower girl for my friends wedding and that was Sept. 04, then blur... this was what my mind was going thru. I knew she was on the meds, but timing, please. Do they know what I was going thru at that time? My brain was on overdrive. I was insane. So I just threw some dates down while they were gone and was sat looking at my paper in a big conference room, alone. I started thinking. This looks like my conference room at work, only thing is at my work we talk about painting houses and here they talk about saving lives. Same table, just much smarter people.
Finally when everyone came back to the room and saved me from my own brain and self wallowing, we got an EKG done on Lily, not a fan of cold things on her chest, let me tell you. She was 45.5" tall and 46 lbs. Her blood pressure was great and daddy and her left. He took her to school and he went back to work. I then had to go to the actual hospital (we were in the next building) and look at tapes from the EMU (epilepsy monitoring unit) with her neuro. The video was done this past June and I was most traumatized by the fact my hair was so long and pretty. Why did I ever cut it? I also was embarrassed by my low pants and my tramp stamp just flashing on TV. Lily's seizures were very mild there, I showed him the seizures, he agreed they were and my job this month is to count how many times a day her head drops. That is all she does, which is a miracle coming from where we were, but they are hard to control. One spot on the video I am dead asleep as well as Lily and the light comes on, it is about 11pm and I look like I am so freaked out and can't see, I was really trying to stifle my laugh watching it and I thanked God Andrew still wasn't there, I know he wouldn't have been able to stifle it. It was hilarious. I was all sketched out.
Anyway, they gave me my journal and sent me out into the world. Monday she has an hour long EEG and then Feb. 12th we start the meds. But we have no idea what we are starting. We may start high dose, medium dose, low dose, or no dose sugar pill. I am pretty sure I will know what type of dose she is on. I am praying for low/medium dose. He said one out of four we will have sugar. I said well then count us in. Our odds are usually good that something we don't want to happen will happen. Don't take us to Vegas. This will be an 18 week adventure. I will share with you all that happens while it happens.
Gotta love our handsome Chinese Neuro, who grew up in London and trained in Australia. His voice is like drinking lemonade when you think you are drinking water. I love how every visit he says to me, "if you can't trust your child's neurologist, who can you trust".
I also think I was meant to work in the hospital. I don't know if TV glamorizes it, or what, but every time I am there, I want to stay. I want to wear scrubs. I want to drink coffee there. I want to eat there. That is where I was supposed to be. Maybe my 30's will be school and a new career???? What do you all think? Nurse Kim? I should have enough pre-req's being Lily's mom.