Extreme Illnesses: Me and the NHS

My kids don’t do anything by half. They show determination in everything they do, and are extreme in their attempts.

So a little bit like me.

But whereas I concentrate my efforts on Skydiving, Crossfitting, Mountain Climbing. The kids…… they seem to currently focus on tag teaming each other for new medical conditions and seeing how extreme they can go.

Libby-Sue set off the relay, dominating the initial race by trying to fit in as many conditions as possible in her younger years. Starting with Epilepsy, then Hip Dysplasia, and rounding up with a bit of hypoglycemia.

Finally her work was done and she passed the baton to her big sister who stormed down the track getting her sprint start straight in with getting an incurable condition, Type 1 Diabetes. If that wasn’t enough she thought she would add by having a year with Complex Regional Pain Syndrome before finally handing the baton to Owen.

Owen, the boy who spent four half terms in a row on hospital wards with his poorly sisters. Owen who used to ask when it would be his turn. Owen who is now firmly holding the baton and running the home straight.

It is definitely his turn now.

Today I watched my son have his second general anaesthetic. It was the tenth time I have walked down that same brightly patterned hall, headed into a room filled with men in funny net hats and blue paper clothes and have stood by as they put a needle in my child and sent them off to an artificial sleep.

The first time was five years ago with Libby-Sue and I remember the horror of it. How I sobbed as my then eight month old baby went from being vibrantly awake to suddenly slumped into my arms.

Today I merely stood to the side as Owen lay with an oxygen mask on his face, a needle in his hand. He counted to four and was gone. I kissed his head, said a silent prayer to something I don’t believe in often and walked out of the room.

The nurse patted my arm.

“Well done,” she said “mums normally cry, you didn’t flinch.”

Dry eyed I turned to her, and offered what I hoped looked like a sad smile (never really sure if I pull that look off) and said,

“I’ve been here before, quite a few times.”

Silently we went back to the ward.

I feel guilty not giving Owen the panic that I used to harbour when Libby-Sue was under anaesthetic. I used to pace the halls, check the time, worry till grey hairs started to spurt.

Now I merely flip on my laptop or crack the spine on book and wait, desperately craving a cup of tea. Resenting the no hot drinks on the ward rule tremendously.

He came back to me fine, with ears that had been cleaned out, new grommets inserted and a slightly quieter tone.

Then we waited to see if the relay was finally over.

You already know it isn’t. Not with my kids.

His minor surgery today basically highlighted he needs major surgery on his left ear. His ear drum is severely retracted, his hearing bones broken, and the whole area looks like an alien foetus.

He needs surgery, where they will cut him open behind his ear, remove the alien foetus, rebuild the bones, and replace the ear drum, all using tissue from inside his ear.

It is unlikely that his hearing will improve and actually a side effect of the surgery is permanent hearing loss.

Odds are as he grows the ‘artificial’ ear won’t mature so in 12 months we could be looking at more surgery to rebuild again.

He is marked as urgent for surgery, in NHS terms this means some point in the next 3-4 months. When it happens he is likely to be in surgery for 4-6 hours. I have already booked in to the hairdressers to replace the grey.

Then he will need 2-3 weeks off school – one of us is elated by this.

It would seem the race is very much still underway.

Surely at some point one of them could drop the baton?