We arrived at the Cook’s Children’s Hospital in Fort Worth at about 11:15 yesterday morning. It’s a 5 1/2 hour drive from Broken Arrow.
I am presently sleep deprived so I apologize now for all typos and grammatical errors. 😉
I wanted to document this trip a bit, but Dillon won’t allow pictures. I don’t blame him really. He thinks the fewer people who know we are here, the better. I, however believe in the power of prayer. And we have friends who genuinly care and want to stay updated.
There was a time when Dillon would laugh and joke about epilepsy. “What does a seizure look like? Well, ever catch a fish and watch it bounce on the deck? Kinda like that.” but at 15, after years of hoping, wishing, and praying this would go away, his sense of humor is gone. He’s turning bitter over this, and I’m presently at a loss as to how to teach him to find the humor and joy in the midst of it all. But we keep trying.
I did discover last night that they do have wi-fi afterall. Facebook and myspace are blocked, but blogger is open. So I’ll post my updates here. Facebook feeds from here so I’m hoping this works.
Yesterday was a normal day as far as registration and such went on. Cooks is much larger than Saint Francis and finding our way through the castled walls (Yes, it looks like a castle for the most part) took some time. But we found our way with a little help from our friends on staff.
The staff here is excellent. Our first person to meet was Donnie our paramedic. He plays soccer just like Dillon does. That helped bond them a bit while Donnie took his stats. Our Day nurse Jenn, is a young gal, full of energy and has a small stud on her nose. Dillon liked her pretty fast. I’m feeling my age. I look at these “kids” on the floor who aren’t much older than Charlie and remember they’ve already been through college and know far more that I ever could about medicine.
I forgot the name of his eeg tech, but she will be back today. She is about 47 and has – SIX kids of her own. Born and raised in the Fort Worth area. The fact that I try to hold conversations with everyone I met yesterday – drove him insane. By the end of the day, he was ready to disown me. Conversing was not what he wanted with anyone including me.
After meeing Doctor Malik and his nurse practioner Esther (I love that name!), I felt a little more confident in this trip. Dr Malik has ordered not only the video EEG, but also an MRI, Cat Scan and PET scan. The pet scan sounds the coolest. Modern technology is great. They will put Dillon on a no caffine and no sugar diet for Wednesday thus depriving his brain of sugar. Then on Thursday they will inject a dye that mimics sugar to the brain. The parts of the brain that are not effected by the seizures will soak up the sugar/die. The parts effected by the seizures will not. Is that not cool or what? For the first time in eight years, we will be able to find what parts of the brain are effected. Normally they guess at it, buy the seizure types and what part of the body is impacted. It’s a mirror. If the left side of the body is what is moving, then the seizure is usually in the right side of the brain. Now we have a shot at getting more information.
his night nurse is Kim – another Mom like me. Closer to my age, maybe a little older. Very warm and very kind. And very nurturing. Telling me to make sure that I also take care of myself and that they will take care of both of us while we are here, not just Dillon.
They took Dillon off his meds yesterday, and true to form he did have a seizure at about 6 am. They caught the whole thing on tape and on the EEG. I’m thrilled. The staff came in and the nurse spoke to the camera about the stuff the camera couldn’t see. normal stuff really. The only thing that caught me was “His lips are gray. He’s not breathing well.” It was over almost as soon as it started, and he came to looking for me.
I do get to sleep in the same room. They have a couch/bed thing with a hard foam mattress. Sleep is not really the right word – it’s more like lay down, close your eyes and listen all night. That and jump five feet when they come in to take his stats. But I think I got a couple of hours, so we’re good.
Not much more to write at this moment. I’ll post more as the day or week progresses. God bless.