The Seizure...

I woke up early that Saturday morning to the familiar sound of Makily fussing. I slowly sat up, rubbed my eyes and went to turn the light on in the living room. Makily and I were sleeping in the living room because we were doing renovations on our bedroom. I looked over at the clock, it was 3 AM. I went over to Makily and she was still crying and had started grabbing at her G tube. "Does your tummy hurt baby?" I sat down next to her and lifted up her shirt to check the G tube. It wasnt leaking...that's good I thought. I checked her diaper that was still clean and then sleepily decided I would give her Prevacid thinking maybe her tummy was bothering her. I quickly prepared it and gave it to her. Makily calmed down. I turned the light back off and laid back down on the couch. Right as I began to drift back off to sleep Makily made a strange noise. I jumped back up and turned the light on. I looked at her and she was staring at the ceiling. I said her name once.....twice......nothing. I sat down next to her and shook her she continued to stare as if I was not even in the room. My mind started to race but I immediately was talking myself down at the same time. Is this a seizure...........no it can't be....we just went to neuro yesterday, they said she was FINE....you are just thinking seizure because we were just at neuro......stop jumping to conclusions. Then I picked Makily up and immediately realized, I was not jumping to conclusions. Her entire body was limp....she had NO tone, in fact had I not felt her breathing I would have thought she was dead. I quickly laid her down on the couch and she was still staring vacantly. I shook her, screamed her name right in her face....clapped my hands....still no response. I am getting scared now. I have said many times that Makily can ignore you like no one else can so I decided I had to do something that I KNEW would get her attention no matter what. I pinched her leg.......still nothing but vacant staring.....then it started.....the twitching of the same leg I had pinched. I grabbed her leg and it stopped....as soon as I let it go it started again. I ran to get the phone....by the time I got back both of her arms and legs were twitching. I call 911......."My daughter is 2 years old and I think she is having a seizure." Notice the words "I think". My child is very obviously seizing in front of me but I was still even then trying to deny it in my mind. The 911 operator made sure he had all the correct information and said he was dispatching someone immediately. Makily remained non-responsive and actively seizing. I kept asking why she was seizing for so long and why it wouldnt stop. The operator just continued to ask if she was still breathing. Yes she was...after about the 3rd time he asked me, it occured to me that she could stop breathing. It was about that time that I could feel myself start to panic and I started to cry and shake Makily while screaming her name. The operator told me to calm down and that if she was seizing she couldnt hear me. I quickly got myself back together and asked what was taking so long. He kept saying "they are almost there". It seemed like an hour had gone by. I opened the front door and a few minutes later heard the ambulance but they were not driving up. WHAT ARE THEY DOING!!!!! I ran back over to Makily and she had pooped.....Do I change her...should I move her...what do I do, God help me. The ambulance drove up just then. I hung up with the 911 operator and looked at the phone....the call had been 13 minutes.......I could feel the knot in my throat forming as I realize that she had been seizing for at least 15 minutes. A female and male paramedic walked in the door looked shocked and said "OH, this is a pediatric call?!!?" The female knealt down beside Makily watched her for about 5 seconds....picked her up and ran out the door with her. I grabbed my keys and ran after her. The male said they were taking her to Munroe and I said I was going with them. I got in the ambulance and I heard the female say "her oxygen saturation is 72%" (normal is 95-100). My heart sank. I know Makily is so hard to intubate even some of THE BEST pediatric docs struggle to get an airway on her, she is starting to go into respiratory distress, what if they can't get the tube down? I CAN'T BELIEVE THIS IS HAPPENING. I called Allen and my parents while on the way to the hospital and basically blurted out "Makily is having a seizure and they are taking us to the ER". The ambulance ride was awful. It took several doses of meds to make the seizure stop...her IV was not easy to get in and blood was everywhere. I remember seeing the paramedic go to put an oxygen mask on her face. I said "she hates anything on her face!!" The mask was on by the time I got the words out and Makily just laid there.....staring vacantly admist slowing twitches of her tiny body. I realized how "not with us" Makily was at that moment. We got to the ER and it seemed like there were 20 people around her bed all talking and doing things to her. I felt like a robot rattling off her medical history and explaining her difficult airway. It all seemed so surreal. It took 4 or 5 attempts to get her successfully intubated. Each failed attempt would end with Makily coughing and gasping for air and me crying and praying with all my might for them to get the tube in place. I kept seeing flashes of her smiling and laughing....visions of Makily sleeping on my shoulder and hearing the sounds of her breathing in my head. God please don't take her from me now, I am not ready to let her go yet. Finally they get the tube in place.....it was taped VERY securely. It was so tough to get down that they actually assigned a nurse to stand by the bed and "protect THAT airway". Her job was to make sure Makily did not wake up and start to move the tube around or pull it out. The meds would start to wear off and Makily would start twitching again. How long is this going to go on!?!? GOD PLEASE MAKE IT STOP!!!
They would dose her back up with meds and she would calm. She spent 4 days in the hospital, 3 of which on a ventilator. I have never seen her recover this quickly. God heard my cries and all the many prayers and decided to let her stay here. She still has so many more lives to touch and lessons to teach. Her work here is not done and I pray it won't be for a very long time. Until then, she continues to amaze me and make me fall even more in love with her each and every day.