Sometimes it’s hard to explain just how dangerous an illness can be for children like Sam.
My niece and nephew may be snotty/grotty with a cold for a couple of days, then will be back to normal.
But for a child like Sam, a cold can mean a week in HDU on oxygen and inhalers, with seizures completely out of control.
And that’s before the risk of secondary infection.
As a wheelchair user, Sam is at high risk of chest infection; he isn’t able to shift mucus from his chest.
Aspiration leads to irritation/inflammation in his airways.
Low muscle tone means he’s often sick if he coughs too much so he will fight NOT to cough.
It’s a vicious cycle, the rubbish builds up, he can’t shift it and before you can say ‘hello nurse’, we have a chest infection.
This week, things have been brutal. Teeth moving in his jaw means increased saliva; low tone means he aspirates easily; and he’s midway through a drug wean.
I currently exist in a world of drool, chest physio and begging him to Please. Just. Cough.
24 hours ago, Sam became very unsettled.
He was whimpering, his temperature shot up to 41C and the seizures went crazy – serious enough to call an ambulance, he suffered two prolonged (status epilepticus) seizures.
Despite medical intervention, the first lasted 2.5hrs, the second only an hour (only??).
Blood and virology tests showed no serious pathogens.
So what had made my son so dangerously ill so quickly?
A standard respiratory virus. In other words – a cold.
Now safely home, I’m hoping that physio, suction, paracetamol and a touch of luck will keep this boy out of hospital.
Status seizures never fail to shake us, nothing makes you feel more helpless and afraid than watching your child seizure out of control, the medication you rely on to break that cycle having no effect.
He’s exhausted, snotty and miserable, but safe.
Sleep is a great healer; I will be staying precisely where I am for now as my boy snores softly in my lap while I type.
Please, someone, send coffee.