Additional Needs
Dear Eating Disorder
by Emily Sutton
on 7th April, 2023
The sweetest sound?!
Right now, I am lying on the sofa bed in the Dudes room, listening to the sweetest sound imaginable at this moment in time – my beautiful boy snoring softly.
Granted, this may not be other people's idea of music to their ears, but to mine, it is priceless because I know he is breathing.
Just two weeks ago, he made the move to high school; safe to say it’s been a huge success so far.
He loves the shorter drive (15 minutes compared to 1 hr to his old primary), is enjoying his classes, likes his new teachers and TA, and is coming home happy and tired at the end of the day like any other 11-year-old.
And, like every other child suddenly returned to the germ soup that is a class full of new friends, the Dude has come down with the dreaded lurgy.
Except, for a boy with respiratory issues, life-threatening seizures, and a few other complications thrown in, there is no such thing as ‘just’ a cold.
After a tricky evening managing secretions with chest physio, seizures going off the scale and regular calpol (seriously, how DID parents cope without it?!) my young man has finally drifted off to sleep... the aforementioned soft snoring confirms this.
While the occasional seizure may startle him awake, it’s a much gentler noise than the screech of his SATs monitor alarming.
Snoring is a symptom of his low muscle tone; with a history of sleep apnea it's something we keep a close eye on.
His vagus nerve stimulator – the small but powerful implant that stops around 70 seizures daily from establishing – has the unfortunate effect of relaxing his muscles even more so snoring/apnea can be worsened.
The Dude's amazing team monitor his carefully to ensure his breathing isn’t affected while giving him the best seizure control possible.
It’s a fine balance involving his respiratory and neuro teams, regular sleep studies and a lot of communication, but it works to keep our boy home where he belongs and out of hospital as much as possible.
With a bit of luck, good management and offering up a quick prayer, this bug will pass quickly and he can get back to school.
At least we almost managed two full weeks?!
