Here we go then....so....on Thursday the pedi opened his phone call with "I just want you to now that even if we had know earlier there wouldn't have been anything we could do" He went to to tell me that they were all shocked my Noah's MRI results. He went on to say that Noah has "significant brain damage" but in a way he has never seen before.
The Myelin (Myelin is an insulating layer that forms around nerves, including those in the brain and spinal cord. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, the impulses slow down) is very badly damaged...but in a localized area. I thought this mean it wasn't so bad...but I was wrong. Noah's Myelin are damaged in his brain stem. There really is no worse place to have brain damage.
Because the brain stem is connected to the spinal cord, the brain stem receives nerve signals, such as touch, sensation, and pain. It regulates the central nervous system. But The brain stem controls many vital functions including breathing, blood pressure, heart function, swallowing, appetite, body temperature and digestion, as well as the need for water, staying awake and sleeping, among other things..
It's not good news..the best we can hope for is a freak something that caused the damage and has now stopped. The neuro team are not hopeful this is the case. We may have to watch Noah get worse and worse until....and there may be nothing we can do.
It's like waiting on death row....Im so angry they didn't listen to me and I am terrified for the future. most days I would just like to pretend it's not happening so I can enjoy my little man like any other mum.
The neuro team are meeting again tomorrow and we should know more this week.
That's all the info I had....I can't answer any questions because I don't know and to be honest it makes me vomit thinking about it..
Thankyou for all your love and support xxx it means more than you could know xxx
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