I woke up at 6AM for what would seem to be no reason. I didn't hear anything - I just had a very nervous feeling come over me. So I stayed in bed, wide awake. About 20 minutes later I heard a strange noise coming over the baby monitor that we still used in the boys' room. I sat up in bed so that I could hear a little more clear. After another few minutes I heard another noise that sounded like one of the boys may be vomiting. I got up and went in their room - still completely dark I went to check Bryce first. I felt around his face and did feel a wet area. I went to clean it up and wondering if he might be laying in some of the vomit, I went to turn him (from him belly) so that I could feel underneath of him. When I moved him, it was like moving a rock. His position didn't change, he was like turning over a rock. I quickly flipped on the light and could clearly see that he was seizing. His eyes were up and to the right, his chin was making a rhythmic movement and he had a slight twitch in his hand. He wasn't responding to me in any way. I quickly moved him to the living room (by this time Cohen had woke up and was following behind). <
I called 911. During the call the dispatcher had someone call my mother-in-law so that we could have people in route to my home. I needed someone else to get there so that I could go with Bryce. Poor Cohen was oblivious to what was happening and I was trying to keep my cool in front of him. I can't say that I did a very good job of this. The ambulance arrived and the paramedics let me walk Bryce out to the ambulance. Right when they were about to leave, my parents and mother-in-law came flying into my driveway. I must have told them a little bit of what was happening, then shouted demands.... Someone would need to stay with Cohen but someone would need to come be with me and bring me some things from home. These Grandparents came in the early morning hours not knowing what they were pulling in to find. Amazing Grandparents they are (actually amazing just doesn't cut it - but that is for another post.)
We arrived at the hospital and there must have been 20 people or more working on Bryce. All I could do was stand back and watch. Bryce's condition hadn't change at all and I knew by that time it had been well over an hour. I kept thinking - this has to be his shunts - this has to be a shunt malfunction. The Chaplain was there to stand by me - which bothered me even more... I kept thinking why were they sending the chaplain in? After what felt like an eternity but I know that it wasn't - my parents were there. We stood back and watched. On occasion they had me go and be next to him. I honestly don't know how I stood on both feet. Finally the doc in charge (she at least seemed to be the one in charge) came to me and said we are going to need to intubate him. I was crushed - why was this happening?!?! She could see it in my face - please no. She told me that I had 5 minutes - I needed to do anything possible to get him to come around. They needed him to start responding. His CO2 level was 94%.
I quickly told my dad that it was time to call Matt- Poor Matt all the way in Idaho was about to get the worse phone call ever and was hours away from us. Why was this happening? I was by Bryce and I know that I was pleading with him. I had that desperate conversation that no one should ever have to have pleading him to stay with me. It didn't take much longer for him to bring up his little arm and start hitting at the "bag" the nurse was using to keep him breathing. He was fighting - of course he was fighting - he always has!
After various medications and tests, things slowed down. The shunts were stable so that was good news but left us with many more questions. Matt was trying to make it home but (on Saturdays) there are only two flights out of Idaho so he wouldn't make it back until late that evening. Bryce was admitted to the PICU and we stayed over night. No one knowing what really happened, other than he had a seizure that lasted at least three hours (counting from when I found him anyway). He was started on an anti-seizure medication and we went home. I pushed to have a Sleep Study done since he had done this in his sleep - similar to the September 2011 incident that occurred in his sleep. See post Trauma South Carolina if you weren't aware of that one.
We did have a 24 hour EEG with sleep study done in February. The results came in as follows: Bryce slept 3.5 hours (the picture should show why) and stopped breathing 7 different times. On average he would stop breathing for 23 seconds and his oxygen saturation would be around 77% (normal is 99 to 100). There it was - the answer to what happened. So most of the time Bryce is able to take that big breath but obviously there have been two times where his brain did not tell his body to breath.... This isn't sleep apnea but instead centralized apneic events. We have our answer so now what do we do?
Bryce will have another Sleep Study done tomorrow, May 2nd but this time with oxygen titration. They will have him on a low setting of oxygen and slowly turn it up until he stops having these pauses in breathing. Most people know that I could count on one hand the number of nights that I don't get up at least 3 times or more. Even on a good night I still get up at least once or twice. As you can imagine though, knowing that he needs oxygen but waiting for the second study and results to give him that necessary oxygen has made it even harder to get sleep. I am hoping once we get this all straightened out that we all start sleeping a little better, and for Bryce, a little safer.
Wish us luck - We hate overnight stays at Children's, but at least this one is planned.
This child does absolutely EVERYTHING with a smile! We can all learn something from him.
Prayers for all of you on Thrusday, Hang in there littleman God will be with you !!
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