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!
6 comments:
Sorry I haven't been around lately. My life is a bit hectic but never too hectic to offer you some support.
I'm so sorry about Brennan. Us moms are so hard on ourselves and I think listening to our mommy guts is the best lesson we can learn. I had something happen to my oldest daughter that I should have listened to my gut about. To this day I still feel guilt over it but I think as mothers we tend to ignore that gut feeling because we want to be hopeful. We want to be positive. We want to believe that everyone is telling us the truth and has good intentions. My husband's niece who lost her 6 year old son this past summer and she had that gut feeling with her son when he was an infant. Something didn't feel right to her. He was always sick. Finally at 9 months she took him into the ER and demanded that every possible test be run. That's when they found the Leukemia. She had much guilt over that and the truth is that finding it earlier would not have made a difference.
I'm a nurse and like you I would have believed what you were being told. All 4 of my babies were breech c-sections. My firstborn had a smashed face and held her body a certain way. My third had gross motor delays and didn't start to catch up until he was two. I trusted the doctors that these issues would work themselves out. Looking back, if it had turned out that something had been gravely wrong I would have still tried to ignore my mommy gut because I wanted desperately for everything to be okay.
I don't know if writing this helps you any. I just know how easy it is for us moms to beat ourselves up. I also know as a medical professional that brain injuries in infants are not easy to diagnose. I also understand about not understanding the suffering part about death. Our nephew suffered terribly in the last 14 hours of his death. That was on top of 6 years of suffering with his disease.
All my best to you. Sending peaceful thoughts to help you through this difficult time of year.
You know I trusted my instincts~no one else did. My husband is like what you are describing~he kept hope until they showed us the MRI where it was obvious his brain had shrank 25% in 3 weeks. I think he crashed harder than I did.
I'm sorry about your nephew's death. Poor guy. All those lovely procedures etc. How is your niece doing?
How are you dealing with the loss? Are all 4 of your kids within "normal range"?
Like I said before he could not have been dxed any earlier nor could he have been saved. It's not like the docs made an egrerious mistake, it's just that most of them act so frealking superior. Their biggest compliment: You're very smart, you should be a doctor.(I'm raising an ironic brow right now.)
Doctors really don't trust mother's instincts enough.
And I really hate how they leave out certain details for whatever reason.
A mother's instinct is a powerful thing. You did all that you could have done. Hindsight can be tortureous sometimes, but you did all you could have done. I'm so sorry you had to go through this--the pain is still raw as you write about it. I admire your ability to share it with us.
I totally agree with Shauna, a mother's instinct a very powerful thing. A very important diagnostic tool, that doctors need to pay attention to. You just know, you don't want to know, you want to be wrong, but that knowing is always there. I can't believe that the doctors didn't tell you about the abnormal testing. It is insulting and how can you trust doctors who don't tell you everything. Plus, how can you as a parent, make decisions if you don't have all the information.
Finally, it just sucks all around that Brennan had to get sick and endure so much. I am so sorry, I wish with all my heart that this never happened to him...or you. XOXO
What was his illness? Was it there when he was born? Oh I can never tell you that "I know how you feel" because I don't but I want you to know that you are a wonderful person and I truly admire you for your strength.
Post a Comment