The seizure, part 1

First of all, thank you so much to everyone who has been praying for Gracie and for all of us. AGAIN. We really do appreciate every single prayer that goes to God on our behalf. I am going to write this post somewhat like a timeline, so that everyone can know exactly what happened and when.

July 4, 2010- 4th of July picnic at church. Gracie was so happy and played, played, played the whole day. Toward the end of the day, I wondered if she was feeling a bit off, but she had been in the hot sun with no nap, so I shrugged it off.

July 5, 2010- I found out (remembered) that the kids had been exposed to Hand, Foot, and Mouth disease. It was going around BEFORE we left for Florida, but what reminded me is that a couple of kids from church had it when we had come home. I was concerned, but not too badly. I figured she might get it, since she gets everything that comes within a mile of her, but it's a normal childhood illness. I called her pediatrician's office, just to ask what to do if we saw any signs. The nurse said that there wasn't any treatment for it, but given Gracie's conditions, they would want to see her immediately if we saw any signs. Lo and behold, that evening she had a blister on the inside of her hand. So, we went in, and I was basically told to treat her with Tylenol for discomfort. We went home, played, went swimming, and went to bed. All was well.

July 6, 2010-
8 am-Gracie woke up acting very off. Sad to say, but she was much too sweet for my girl. She had no desire to eat or drink anything. So, I took her temperature and it was 101. I called the pediatrician again (any temperature warrants a call for us), and they wanted to see her. We chose not to re-run any CT scans or anything, as she looked and acted neurologically fine. Her throat was patchy red. The only concern was that her temp had gone up to 103 in a little over an hour. The nurse gave her a dose of Tylenol there, and then we went home. (With a stop at Wegmans to get freeze pops!!) 
12pm- Grandma takes Gracie into the pool. Her temperature had gone down and I was fine with her going in for a while. She was starting to act VERY tired and cranky, so I took her in and laid her on the couch. I ran to the pharmacy to grab a new thermometer and some different tylenol for her. When I got home, she was awake, talking to my nephew.
Around 2- 2:30 pm- My mom went to take her temperature for me. She joked with me "Do you want the good news or bad news?"...and then Gracie started walking to the bathroom, like she had no clue where she was going. Her eyes rolled up into her head and I knew she was seizing. I had my mom put her on her side, and I called 911. I yelled for help. I kept expecting the seizure to stop. Before her shunt failed, she had a seizure, and though it seemed TERRIBLE, by the time 911 got there, she was coming around. This time, that wasn't the case. As I waited for the ambulance, she stopped breathing completely and my mom's best friend had to begin mouth to mouth resuscitation.The ambulance drivers got there and immediately yelled into the walkie talkie things that this was a 3 year old girl in a full code. I remember my knees starting to go out from under me, but I stayed up. They worked on her for just a couple of minutes and then got her right into the ambulance. At this point, I knew it was bad. I've had many experiences with ambulances and I know they usually try to do what they can in the house. I got into the front seat, and we took off. We were flying through Horseheads, at about 65 miles an hour. I kept asking if she was breathing, and they said yes, but not well. They were giving her anti seizure medicine, but it was NOT working. When we got almost to the hospital, the EMT told the driver that they would need some time when they got to the hospital. They were trying to intubate her, but her airway was completely closed. I got out of the ambulance and watched as they tried to help my baby, and she was completely lifeless. At that point, I dropped to my knees, right there in the ambulance bay and cried out to God. I didn't get up until the doctors came out and told me they were taking her in to the ER. They had been unsuccessful at intubating her because her airway was still suppressed from the seizure, and 2 IV sites had already infiltrated. They had given her DiaStat, Phenolbarbital, high doses of valium, zonegran, and depakote. and finally had to use high doses of Fentanyl. This whole time, they were bagging her with oxygen, because she was still not breathing. This lasted for about 40 minutes.