Monday, September 10, 2007
Not My Smartest Move
Last night after I wrote my previous post, I went and got out my copy of Brennan's hospital chart. I haven't been ready or able emotionally to really look through this. But some of my recall is fuzzy on the med schedule and the exact dates in October-November when we were in the hospital.
Oh my Good Lord, that baby boy suffered. I will never ever understand what good comes from a sweet, pure, innocent baby suffering in such a harsh way. I have stopped asking why maybe 10 years ago because there is NO answer to that question. There is no one to blame for what happened to my youngest son, my most planned child. It was one of those things. No one hurt him, we had no idea we carried anything harmful and there aren't any screening tests so I can't blame us. I can mourn what that sweet sweet baby went through during the course of this terrible, nasty, life sucking disease.
I was never told this~SURPRISE! NOT!but Brennan never had anything close to a normal EEG. An EEG is when they measure the electricity going on in a brain. This poor child never had normal sleep waves. There are four stage of sleep on the brain. A waves(normal awake brain activity), B waves, Theta waves, Delta waves(deep sleep) and REM or dreaming sleep. My poor kid never had normal sleep waves on both hemisphere of his brain. The right side of his brain was messed up electrically from our first visit to Childrens. I read all the EEG reports(12 of them) and he was never normal. Shouldn't I have been told this? I get very angry when doctors think it's better not to tell the parents the details. This tends to be because the doctor doesn't want to define all the parameters. It's too complex for us normal folk. I feel like punching all the doctors who never explained the EEG results. I would have had a clearer picture earlier. That means my son could have spent less time in the hospital.
Every time they had to do an EEG on my 5-7 month old infant they GLUED(like in superglue) leads to my infants head. These left welts when removed, sometimes open sores. How nice that must have felt. This was done at least 12 times and several times he had the leads on for 12-24 hours. His skin began to break down from the leads and their remover, acetone(nail polish remover).
I wonder if his brain ever worked normally. My instincts told me there was something wrong from the time he was 6 weeks old. Everyone told me he was just a bit slower in development than his big brothers. BPB rolled over at 2 months old. BBB walked by 10 months. Brennan could roll one way by 5 months. His gross motor skills seemed behind. His fine motor skills were fairly normal. Not only have I had 3 children but I had taken many developmental classes and knew(still do) the parameters. Still, I was treated by everyone who thought I was imagining problems that didn't exist. Thanks guys. Have we forgotten who we were placating? Miss 160 IQ(exceptionally high in verbal skills, comprehnesion, and I had a somewhat photographic memory for social studies).
Brennan was breech and delivered by c-setion. This adorable little boy could never hold his head straight up. It was always crooked to the side. I was told that was because his head was under my ribs and was mostly muscle/tendon immaturity from placement in the womb. He was near to normal by four months except if he was tired, then to the side his head went.
I'd like to make something clear, they really couldn't have diagnosed him much earlier. He was diagnosed from his second MRI where it was clear his brain had shrunk 25% in 3 weeks. The first MRI during our first admission showed some slight abnormalities but that is probably true of any infant or adult. Our brains don't look like they do in the Anatomy book.
Being dismissed is what upset me. Until Geo heard the dx from an actual neurologist he felt I was being pessimistic. Um no. From the minute we walked into Childrens I knew Brennan had something major wrong with him. I would have loved to be wrong but I wasn't. My pediatrician apologized to me about his lack of concern and trust of my Mommy instincts. Too late mate!