14/08/2014 16:53 BST | Updated 22/05/2015 10:12 BST

Surgery And Hospital Stays

The Secret Diary of a Special Needs Mum: Surgery and hospital stays

My amazing son who I'll call J, is two and a half, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...

The night before J's abdominal surgery, I couldn't sleep a wink.

He'd had major surgery at Great Ormond Street Hospital before, as a small baby, and I was still haunted by memories of leaving him anaesthetised in his little froggy babygro, and him waking in agony in the recovery room.

On top of that, our earlier stay at the hospital had been a problematic one - some serious nursing mistakes in his surgical aftercare were made, complained about and apologised for. My abiding memory was of not being able to find a qualified nurse when we needed one (which was often), dirt, and machines not working.

So it was a huge relief that this time around, two years on, the quality of care was exceptionally good from start to finish. So much so that our family has just written a letter of thanks and praise to the hospital.

We arrived at 7.30am in the pre-surgery day ward, along with dozens of other children and their families. Having been nil by mouth since the previous evening, J was allowed a small drink around 8.30 but no food and then nothing more to drink, and we were very worried that he would quickly become thirsty and hungry, but by some miracle, he didn't seem to notice the lack of breakfast. There were plenty of toys to distract him, and play workers who made an effort.

Finally he was called to theatre around midday. The nurse brought along some cars she had kept in reserve, which focused his attention as he sat on my lap, and the mask of anaesthetic was wafted around him.

Suddenly he realised something unpleasant was going on - the smell of the gas was very chemical and nasty - and he said: 'Scared' and fought the mask. Seconds later, he was unconscious, and my husband and I left in tears.

Two hours later, we were taken to the recovery room where he was waking up, under the expert care of a senior Irish nurse. This was not a huge operation compared to what he had been through before, but it was still no small thing.


My poor boy was whimpering in pain and shock, covered in tubes and wires; his heart rate dipping. His eyes rolled back and he slipped into sleep as morphine was delivered intravenously every 20 minutes.


He had his own small but spotless room on Island Ward, and the nurses and equipment were outstanding. Jade, who looked after him that first day, was always there, making sure J was OK and giving him pain relief.

That night, I stayed up with him till 3.30am, when my husband came to take over. I went to the mothers' unit to try to sleep, but by the time I'd found my shared room and made up the sticky plastic bedding, I realised there was an all-night building site outside the window and I couldn't sleep.

After two nights of next to no sleep, I was a wreck by the following morning. But amazingly, J was out of bed, lying in my mum's arms watching his favourite DVD with just the hint of a smile.

The surgery had been a success, and he was moved to an even nicer room on Sky Ward, which is an NHS ward in a smart private wing of the hospital I'd never been in before.

That night, J slept well, and I got a few hours too, in the little fold down bed in the room. And the day after that, J was drinking and eating a little again, and hobbling around the ward's playroom despite the cannula in his foot.

He was virtually himself again, and the surgeon declared all the tubes could come out and he could go home. J was thrilled and walked down Great Ormond Street himself in his pyjamas as we looked for a taxi.

The surgery was on a Tuesday, and by Friday morning J was waking up in his bed at home, back to normal, but even better, because he was no longer in any discomfort as he had been before the surgery.

That was a few weeks ago, and he's happier and healthier than ever. He has one more operation ahead (minor heart surgery) and then his hospital stays should be over.

You can read previous columns here.