Well, not so much.
The idea was that if Hayden sleeps, mommy sleeps..... again, not so much.
Turns out...
Hayden has two types of sleep apnea.
Obstructive:
"Obstructive sleep apnea is a condition in which the flow of air pauses or decreases during breathing while you are asleep because the airway has become narrowed, blocked, or floppy."
Central:
"Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing."
It appears that the surgery has helped significantly with his obstructive sleep apnea. However, the obstructive sleep apnea was masking the intensity of his Central Sleep Apnea. So those 2-3 "wake-ups" I mentioned.... are now full blown episodes of the exorcist. The screaming, the crying, the shaking...as if he is awoken by a horrific nightmare. It usually takes Brandon and I both to calm him and lots of TLC.
Sigh...
As I described it to the doctor, he stopped me. "His sleep apnea is neurological. He probably wakes up to the sensation of suffocating. There is no telling if this is related to his chromosome abnormality or if he will grow out of it. But some kids do grow out of it by the age of 3 or so. In the mean time, we just wait. Let's give it some time and see if it improves as he grows."
So here I sit again--- staring at his monitor....jumping up with every slight noise that I hear...and panicking when to much time has elapsed since he last moved....
Sleep? Yeah, that's over-rated.
Central:
"Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing."
It appears that the surgery has helped significantly with his obstructive sleep apnea. However, the obstructive sleep apnea was masking the intensity of his Central Sleep Apnea. So those 2-3 "wake-ups" I mentioned.... are now full blown episodes of the exorcist. The screaming, the crying, the shaking...as if he is awoken by a horrific nightmare. It usually takes Brandon and I both to calm him and lots of TLC.
Sigh...
As I described it to the doctor, he stopped me. "His sleep apnea is neurological. He probably wakes up to the sensation of suffocating. There is no telling if this is related to his chromosome abnormality or if he will grow out of it. But some kids do grow out of it by the age of 3 or so. In the mean time, we just wait. Let's give it some time and see if it improves as he grows."
So here I sit again--- staring at his monitor....jumping up with every slight noise that I hear...and panicking when to much time has elapsed since he last moved....
Sleep? Yeah, that's over-rated.
Hang in there. You know how to advise others how to ride this out, but experiencing it with your own child is very different. Call me if you ever need an ear or a shoulder. Just keep reminding yourself to live in the moment and to breathe. I know that is very challenging for you, but you need to let go & let God in those moments when the monitor is quiet for too long & those moments when you feel helpless to alleviate Hayden's suffering. That is the hardest challenge you'll ever face. Good thoughts and prayers for refreshing rest and peace tonight for all of you.
ReplyDeleteCall me if you ever need sleep :) I'm usually wandering the house like a crazy woman at night! Have you seen those sleep-safe monitors?
ReplyDelete