When Everything Changes

There are times of demarcation in your life; points when everything changes and you can't go back.  It can happen in an instant.  The before and after.  You can know it is coming, such as a high school graduation.  Or it can blindside you like a car crash.

One such change in our life was Kai, with all the encompassing "special needs."  I still remember vividly the day we found out that something wasn't quite right.  We had no clue as to the depth of it, and the small window we did have completely rocked my world.

I remember going back to work a few days later.  One of my coworkers (who worked in a different part of the building) discovered I was pregnant.  As she gushed about how exciting a baby boy would be, I couldn't help the tears that came.  My baby had hydrocephalus.  He might not even make it to birth.  There was a chance he could be "normal," but the odds weren't good.  My baby.

I remember when he was born.  A small strangled cry and then silence.  The silence was deafening as I laid helpless on the OR table, craning my head and neck to get an upside-down view of doctors backs, seeking in vain to see my boy.  They were trying to get Kai to breathe.  It took an eternity.  Three weeks later, the diagnosis: Marshall-Smith Syndrome.  Another world shift.  Another point of no return.

Our world shifted again March 23rd at 4:50 am.  The night nurse woke us up, asking if Kai has seizures.  When we answered in the negative, she said she thinks he is having one.  We rushed to Kai's side, but by the time we got there, he had stopped.  In fact, if she hadn't recorded it, I would have thought that he was just twitching in his sleep.  However, after watching the two video's she recorded, and hearing her explanation on what had happened, it left little doubt in my mind: Kai had had a seizure.  I have spent countless hours watching him sleep (that sounds creepy, but when you have a kid who has to be monitored 24/7, you watch him even while he is sleeping), and I have never seen him do anything like that.  A wave of the arm here, a twitch of the foot there, but nothing so rhythmic and so prolonged.  Add to that he wasn't responsive when the nurse tried to rouse him (she claims quite vigorously), and it is definitely out of the norm.

Still hoping that maybe I was wrong, I posted one of the video's online to a group which has vast knowledge of such things.  The overwhelming response was that it looked to be a seizure to them as well.

Into the neurologist we went.  He looked at the videos and pulled up Kai's previous MRI and CT scans.  He noted that Kai had experienced two small seizures in the first two weeks of life, and was so certain that it was a seizure that he started talking about putting Kai on a preventative medication.  Whoa, whoa, whoa.  Hold on there.  He hasn't had a seizure in almost three years--and I had completely forgotten about the two shortly after his birth--and suddenly you want to put him on medication?  No siree.  I know way too much about the awful side effects of seizure medication.  We settled on an emergency medication (to be inserted rectally--agh!) if the seizure lasts more than five minutes.  The doctor said that over 90% of seizures stop on their own, so even if he has one, we wouldn't necessarily need to use the medicine.  He also ordered an EEG, which wouldn't show if he had a seizure, but we would be able to see if he is seizing, or more likely to seize.  A normal EEG means that everything is operating well at that moment; so it might tell us something, or it might not tell us anything.

I received a crash course in seizures and what to do if he has another.  The doctor said Kai had a focal seizure, which means it was a partial seizure--only part of his brain misfired.  It is possible that he had a partial seizure instead of a full one simply because he is missing some of the connections between his left and right hemisphere.  The seizure occurred in the left side of his body, so it was the right hemisphere of the brain.

We aren't sure why he had the seizure, and we are hoping it is just a one-time occurrence.  It is a terrifying and helpless feeling to have your child go through something like that and not be able to do anything about it.  I have included the shorter video of his seizure.  So far we haven't seen any indication of another one; hopefully it stays that way.