Angelman Syndrome, Life as an Angel: Part 1 of July 11, 2011

So July 11th was a very memorable day for us, with lots of reasons to celebrate life. Three years ago, a nightmare was beginning for our family. I called my husband at work because I just had a bad feeling that something was about to happen to Brady.
When I called him, I simply said "something isn't right with Brady, please come home and let's take him to the doc". He knows that I never ask him to do this and there have been few times, even during seizures, that I have asked him to come home. He didn't question me but jumped in his truck and headed straight home.
I called the ped and said "something isn't right with Brady, can you please see him". When they asked what his symptoms were, I said he doesn't really have any symptoms, I just know. Of course they told me to bring him straight in. Halfway in to a 10 minute drive to the doc, Brady had his first of many seizures to come, in the backseat of the car. By the time we walked in to the doc, he had another...eventually he was having them about every 30 seconds. Quite honestly, it looked like a scene from the exorcist. His head would drop, then it would turn, what felt like, all the way around, then he would jerk and drop again. I've seen a lot of seizures but never this many at once and of course I always feel totally helpless.
The doc and nurse stayed with us in the back room and got on the phone with the neuro, they knew we were coming but now to decide whether to let us make the 1.5hr drive to the hospital in Fl, or to wait for the ambulance to take him. We decided that we could get there faster so we ended up driving like a fine truck to a fire. We gave diastat and I'm in the backseat swiping his VNS every little bit, but nothing is working.
I remember so clearly as we drove past the last turn to our hospital, having a brief discussion about whether to turn or try to make it to the hospital that would certainly have the best chance at helping us. In this situation, time was critical and we knew that he would have to be flown out anyway...we just wanted to get him to the people who could help him, ASAP. We drove and between VNS swipes, I quickly jumped on FB to beg everyone to please for my baby. I knew that we needed all the prayers we could get and FB was the fastest way to get the word out. We were terrified and or suing so hard that we were not about to lose our sweet boy.
We finally got to the hospital and they worked on Brady for a while in the ER. They did finally stop the convulsions, but we hung around for a few days just to make sure they didn't come back. We came home for the weekend and at first we just thought he was tired from the whole ordeal, but by the end of the weekend, I had that sinking feeling in the pit of my stomach that something was really very wrong with my baby. I called our neuro and he said to come straight in for an EEG (thank God he is amazing and he really trusts my instincts).
We did the EEG and I remember our doc walking by the room...I kept thinking oh this can't be good at all. I mean he came down from the third floor just to see Brady's EEG....that's not usually a good sign. Then I remember seeing his partner and several other docs in the office, going to the back room where our doc was looking at the EEG. See, we had been through something similar nearly two years prior, we knew that Brady was in what they call Non Convulsive Status (the brain is constant toy seizing but you can't visibly see the seizures. He had been put into a coma for this before.
The doc came in after a little while and sat down on the bed. I remember the look on his face like it was yesterday....we knew it was bad. He said "he's in status again. I don't have any more tricks up my sleeve and we need an outside consult. We will out him into a coma tonight and fly him to a specialist". We had to make a decision on where to go...Miami and Birmingham were on the table. We were taken by ambulance over to the hospital where Brady was put into a coma. The following day the jet arrived at the airport and they came to get Brady. There wasn't enough time for me to get clearance to fly with him, so we had to make the 4hr drive while he flew. Some of our dear friends were there with us and the mom stayed to see us off, but the dad drove behind the ambulance to the airport and stayed with Brady until he was put on the plane.
We jumped in the car and drove as fast as we could to be with him in Birmingahm. Because he would get there three hours before us, another dear friend in Birmingham, met him at the hospital ans sat with him until we could get there. I remember tracking Brady's flight on my phone and watching to see just where he was nearly very minute. I have rarely been away from him and now he was in a coma on a jet...it's nearly too much for one person to swallow.
We finally got there and he already had two personal nurses sitting by his bed, monitoring everything. We spent many days there, watching the EEG, praying for it to get better. He would go in and out of status and sometimes it felt hopeless. Theme mount of meds they they had to give him was unbelievable.
During that time, our friend who had met him there, would come and take the 10pm visiting shift so that we could get a little sleep. We also had another friend bring a special stuffed dog that had been anointed and prayed over. A nice man heard our story and brought a cross, which we kept under Brady's pillow. Some people upstairs, from our hometown, heard our story and send down a homemade card. People on FB began to change their profile pics to Brady and constantly ask for prayers for him. We got pics of runners around the world, holding signs with Brady's name. The outpouring of love and support was amazing. We were even getting phone calls from all over the world.
My baby was laying there, face swollen, hands swollen, feet swollen, and constantly going choked and needing to be suctioned out. The vent is not a pleasant thing to watch and it is not for saying who has a weak stomach. The EEG leads on his head were making sores. He had a PIC line going into his heart and numerous other wires and devices hooked up. But in all this, we were able to find some peace. We knew that God was answering prayers as thousands of prayers were going up daily for him. Finally, after several days, the EEG began to improve.