We are still at the hospital, but I wanted to share our story since I can't call everybody:
Wednesday at about 2:00 Izzy suddenly stopped playing her game with Lorin and she turned her head away. Lorin and I were perturbed that she was being a turkey about the game. So I told Lorin to go do something else and quit trying to coax Izzy to play. When Lorin walked away I expected a protest from Izzy, but she remained unmoved, upright in her chair with her head turned to an extreme angle up and to the right. With a hint of worry, I picked her up and carried her to sit on the couch with me. I turned on cartoons and laughed at something silly, sure it would get her attention and she would turn to watch. When she didn't I looked at her eyeballs and they were fixed, unblinking in the top right corner of her eyes and her head still cranked up and right. "Izzy you're scaring me. Can you look at me and tell me you're ok?" ...no response...just a hollow stare. I turned her head toward me and it moved easily, but not her eyes. I knew I had to get her to the ER. Then I thought again and called 911 telling them that I thought she was having a seizure or something. Within minutes the firetruck showed up, then the ambulance, and all of a sudden there were 6 or 8 ER team members working on Izzy. 5 more minutes and Izzy and I were in an ambulance with the alarm blairing through the streets and the driver yelling back to the 2 working on Izzy warning them of each turn. It seemed like an hour, but soon we were in the ER with 20 more doctors and nurses waiting to restore her. Thankfully she began to fight with them and cry, her eyes now tight shut, wandering where she was and how she got there. 8 hours later Cory arrived (was able to fly in from Arkansas within our time at the ER) and at about that time we moved from the ER to good ole' Mott 7.
Today she is back to normal! Wow! What a miracle! Yesterday, before her seizure she told me she thinks heaven would be a great place to go, and I wonder sometimes how close she must feel to heaven and her Father there. Right now she is our little angel and we're hanging on to her.
So, EEG (pictures will come when I get home), MRI, MRA, MRV, no eating for about 22 hours now (she's still in the MRI room) and she has finally lost a little of her patience, but smiles in between telling me what she wants to eat first and then second and so on.
Lorin and Ryan got to spend some quality time with the firetruck team until friends showed up and took them for the evening. At midnight I was able to pick them up both sound asleep. They're hanging in there like champs (of course plenty of worried questions from Lorin as she witnessed all of the trauma).
Finally, the plan to reduce further seizure risk is for me to give her blood-thinner shots twice a day at home for at least a couple of months (that's right...me give her shots). The Chemo called Asparaginase causes blood-clotting issues (which is the assumed reason for the seizure) and will stop being given at the end of the two months. Doc said he's giving me my nursing degree when this is all over. I told him I don't need it, I call all the shots with or without it :)
Thanks for your prayers and thoughts. We feel very loved!
4 years ago