Saturday, February 23, 2013

Breath Holding

Ollie is having a bad day. He woke up happy but almost immediately began struggling to breathe. He was on 2 liters of oxygen most of the morning and a few doses of meds to try and relax him and calm his breathing. The 2pm diazapam finally brought the labored breathing to a halt and he relaxed enough to fall asleep for two hours in the vibrating chair, his favorite place to be when not in someone's arms.

We just got him out of the bath and he held his breath a few times while we were trying to get him dry and into his pjs. Well technically BACK into his pjs since he never got dressed today. He doesn't hold his breath on purpose like he's throwing a tantrum, the episodes are a result of damage to his autonomic nervous system. Stimuli, like being moved from place to place too quickly, or being held in an uncomfortable way can cause his system to go haywire, it overreacts to the stimulus and he breath holds, these episodes are distressing enough (he turns purple and looks like he's choking) but they also lead to seizures about 80% of the time. So once we see that he's holding his breath we know seizure activity isn't far behind. We try to distract him to snap him out of the vicious cycle, sometimes it works and he'll let out a big scream before calming down, but more often than not it doesn't work. It just happens: stimulus, followed by upset expression on his face, breath hold, seizure, post seizure scream, crying, crying then becomes the uncomfortable stimulus, breath hold, seizure, post seizure scream, cry...

So now a simple thing like putting him into the car, or taking him out of the bath can lead to him having several seizures and sleeping them off for hours like he is right now.

My poor boy, I'm so sorry. Life is so cruel to you.


  1. This little angel is teaching us many aspects of life. From the severly the power of its potential beauty.

  2. Oliver, Chris, and Katie your spirit and will are absolutely awe inspiring. God bless you all.