Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Man Flu and Hugh

In the words of the Marks and Spencer's advert: It's not just a cold... It's a super-snot charged, nose clogging, breathing stopping, chest blocking, temperature raising sleepless night ensuing, germ fest.

You know the sort.

Except, with Hugh, even when it is 'just a cold', it really isn't just any old cold. 

Here's why:

• Hugh has to work hard to breathe when he's asleep. He's still really floppy, it's why he can't sit yet, he's got 'hypotonia' - floppy, not very strong muscles. Everyone's muscles relax a bit when they're asleep but when you're already floppy this can cause breathing difficulties. Hugh had his (huge) tonsils and adenoids removed to make more space and to make breathing easier for him, but he still has prolonged pauses in his breathing (apneoas) when he's asleep. We're still unsure whether this is just his brain forgetting to breathe (Central apneoa) or his floppiness making it difficult to breathe (obstructive apneoa), a long awaited sleep-study should tell us more. When his airways are blocked up (or partially blocked) with snot or inflammation this can make breathing even harder than usual. 

• Temperature and illness are seizure triggers. Seizures for Hugh mean stopping breathing and hospital admissions. 

• Cold - chest infection - pneumonia ... We all know how easily colds can go to your chest and cause chest infections, even in the most healthy of us. But, like the elderly, Hugh is vulnerable to this developing into pneumonia. Any chest infection is bad news for Hugh. Being unable to sit makes it more difficult to clear a chest infection- movement and positioning are key in getting the gunk off your lungs. Pneumonia in children like Hugh can be fatal.

Winter and starting school herald a dangerous time for Hugh with all those germs and all those colds to catch. He's been immunised against flu and hopefully that'll stave off the worst of it. 

Tonight, the first vestiges of a cold have appeared; grisly boy, running nose, slight temperature, so I'm on high alert. 
*Calpol's been given, 
*Temperature taken- I'll monitor this throughout the night, and adjust clothing/bedding as necessary.
*He's hooked up to the sats monitor (as he is every night) and in bed with me so I can keep a close eye on his heart rate and oxygen levels. So far oxygen's ok but heart rate quite elevated- this will be due to the slight temperature and the fact he's working so hard to breathe.
* I have the suction machine ready to suck up all the nasties if (and when) they block his airways
* I've done (and will again during the night) chest Physio to make sure none of the gunk sticks in his lungs, hopefully preventing a chest infection. 
* I have his emergency rescue medication to hand, in case he has a seizure.
* He's positioned carefully- head elevated, airways open to aid his breathing and I've brought his moulded bean bag to the bedroom in case he struggles and needs to be even more upright in the night. 
* There's a nebuliser in the house on standby if needs be, plus oxygen, and we have open access to the children's ward should he get very ill quickly. 

So whilst it is 'just a cold' and he'll no doubt be fine with a bit of calpol to tide him over the worst of it; I thought I'd share the level of preparation that's needed to manage  the common cold in a child like Hugh. 

Hugh really does like to take the notion of man flu to a whole new level.