Brody had a seizure Monday night. Our pediatrician confirmed it was an actual seizure early Tuesday night. Now that I 100% know what a seizure is, he has had them before. Only a couple of times but he has had them. This morning I will be in touch with the Neurologist. I will be demanding an MRI of his brain and want to see if the EEG can be moved up from January 4th to anytime sooner.
We are pretty devastated about this. Yes, I guess to some seizures aren't that big of a deal but there are a lot of factors with Brody since he already has brain damage and this is just one more thing to add to the "list".
There have been only a couple of times I feared my children would leave this world in front of my eyes. Those were back in the NICU days when their little bodies were fighting so very hard for every breath. Monday Brody was not here with us during his seizure. His body was lifeless, he was blue, his legs jerked, and he made a horrific noise, and his jaw was clinched. I yanked him up, and as the seconds turned into minutes, all I could think to do was yell his name, rub his little body really hard to stimulate him like they did so many times in the NICU, and drench him in ice cold water. I just needed him to breath, to come back with us, to not die. And he did. He finally was able to breath and I kept hitting him and rubbing him to make him mad enough to keep breathing. He was so exhausted he couldn't sit up on his own for a while. After about 10 minutes he was totally back to normal but I wasn't. I had to sit down. I told him he could never do that again and that he scared me. He cried and gave me a big hug. That boy of mine!
There are very few things that scare me since the kids were born. Really nothing scares me but when the safety of my family is at stake. I've gotten too comfortable in thinking that the events of the NICU were a distant memory. I guess I've been cocky in thinking that we are past the "big" stuff.
Our pediatrician is such a God send. We had a very long talk last night and he explained how the brain worked and what happens to cause seizures in terms that are understandable. Basically the brain is like a huge computer and sometimes when your computer is running super slow and freezing up, you turn it off to reboot it. That is the seizure part. When you turn the computer back on it takes a while to reboot and that is the recovery part. He told me that if a seizure last more than 5 minutes to call 911. They count the seizure from the actual seizure episode to recovery. He said in his 30 years of practice he has never had a child die from a seizure. I asked him about the loss of oxygen during the seizure, being blue, etc. and my concern on not being able to do CPR with his jaw clenched. He told me that if it happened like that again roll him on his side to clear his airways, make sure he won't hurt himself by the jerks, and for me to not get hurt either. He said some parents have tried to open the mouth but the kid bites their finger off not having control of their bodies during the time. So it's still a grey area about how to resuscitate during a seizure because I have a concern with him going without oxygen for any amount of time.
We are entering another part of this journey full of unknowns. The worry is exhausting. I think back to the months the kids were in the hospital and have no idea how we functioned under the extreme stress and worry and lack of sleep. God was with us there is no other explanation to it. I hope He can give us the same strength because we are exhausted, worn down, but so very thankful. This is our life. This is His plan. Our path, our kids' path. We've always had each other and it won't change. Nothing matters before the health and well being of these three amazing kids. The girls of course witnessed the events Monday night. I hate they did but there was nothing I could do about that. To be honest, that wasn't even on my mind during the events. After Brody was back to normal Madi patted Brody's back and Gracie said "Bubby". Their love for one another is unexplainable.
Krista
