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. 

We went to the hotel to catch a few hours of sleep, as they wouldn't let us stay with him. We were only allowed in during visiting hours and oftentimes our visitation time was taken away because of a crisis with another patient in there. When we left late that night, Brady was out of status but he had gone out and went back in many times before, so we didn't know what we would find in a few hours. When we did return and they let us in, they had already removed his vent tube. Yes, normally this is a happy moment and all is right in the world, but not for our us :(
Brady was struggling to breathe. The nurses and docs were huddled around him, baffled as to what was going on. They mentioned putting the tube back but we shuttered at the thought of that. They thought that maybe I could calm him down and it would help his breathing, we they handed him to me and I sat holding him in a chair.
He continued to struggle for breathes as his little chest seemed to collapse into his back. His skin began to turn gray and lips started losing color. The sheer look of separation in my baby's eyes, will be forever etched into my brain. His eyes were begging his mommy to help him but I was helpless to so anything but rub his head and talk to him. His daddy also took a turn doing just as I did. My eyes met my husbands eyes several times but there was no correspondence between the two of us. We just kept looking at each other, thinking we have come this far and fought this hard, but we are still going to lose our boy anyway.
They were checking blood gases every few minutes and blood gases were getting to a critical level. Finally, Brady totally lost what little breath he had left and his airway just simply closed. He went limp in my arms and I just remember leaping from the chair, tossing him onto the bed, telling the docs to fix him and do it RIGHT now. I told them to put that tube back immediately. Once they got him on oxygen, his breathing did come back but was still shallow and he was obviously still in distress, so they had the ENTRY team come up to scope him. They found growths blocking his airway...growths caused by the tube. They quickly revented him and told me once it was all over, that there was no medical reason why or how that tube was able to go back down his blocked throat...it was GOD! He was taken down for surgery and came back a new kid. This time the docs asked us to stay with Brady while the tube was removed.
After it came out, he coughed a little and then gave us the biggest most beautiful smile I've ever seen in my life :) :) He then signed hungry, bahahahaha! The child hadn't eaten in nearly nine days, so no doubt he was starved. The kitchen made up some grits especially for him and he ate the whole bowl.
We were moved out of the PICU and to a regular room where we spent a few days. They wanted to do one more EEG before we left. I remember telling my husband that my heart just couldn't take it if he was back in status. Our nerves were shot and having to wait for that EEG did not help. It was all fine and we were finally taking Brady home where he belonged.
And here we are three years later without a single seizure since that horrific experience. Life is awesome, God is great! Tonight we celebrated Brady's health and the awesome folks at Santa FE done a huge shout out to him...I will try to post the video later.
Sorry for the long story but I've never fully shared it before, so thought it was about time. Hope everyone has a blessed night/day. Don't forget the cherish every single moment with your love one, tomorrow isn't guaranteed. God Bless!