General anaesthetic number 18

I remember his first ever general anaesthetic aged 8. The really early rise, his upset at no breakfast, his confusion at being taken in the car to hospital when it still wasn’t even daylight yet.

Once there in a playroom I remember smiling as he lined up some toy food totally oblivious to what lay ahead. Thankfully we were first on the list, something I no longer take for granted anymore, and by the time he’d had all his checks and turned the taps on and off numerous times, it was time to walk along to the MRI department, a place I became all too familiar with over the years.

Form filling, more talking, increased nerves, before finally I walked him into that small general anaesthetic room feeling sick with worry.

Back then he was still small enough to sit on my knee. A quick scratch to the back of his hand while I distracted him with his iPad then a mask as close to his mouth as he could cope with and in the blink of an eye my baby was put to sleep.

Seeing him lying on that bed under general anaesthetic for the 1st time made me burst into tears. I left that room to find a cafe for a cuppa having no idea that that routine was to become a biannual event in our lives for many years to come.

My son has a progressive genetic condition that causes tumours to grow on his nerves. Unfortunately, he also has severe learning disabilities and he is non speaking so the only way to check his body and monitor his condition is by MRI. Sadly, that will always need to be done via general anaesthetic which will always carry extra risks.

That first scan sadly showed up a small brain tumour known as an optic glioma.

It also showed up multiple other issues unrelated to his genetic condition but which also needed monitoring. Two years after that first scan his fourth scan brought even more devastating news: another mass had grown, this time ten centres in size! Just weeks later he had another MRI under general anaesthetic followed days later by major brain surgery and yet more scans.

Even during Covid those scans continued as my son grew taller, gained weight and began fighting against everything.

Scan 16 was the absolute worst. Out of fear, my now teenage son lashed out in that anaesthetist room so badly that the anaesthetist wrote to me saying he would never be comfortable anaesthetising my son ever again! Pre meds made him so confused and violently sick so we couldn’t even use those.

Scan 17 six months later involved hours of phone calls, printed visuals, tried and tested strategies, meetings and a lot of emails. Much to my relief that one went well.

And then they gave me the bombshell news: after 17 general anaesthetics in the children’s hospital we now needed to move to the adults hospital next door as my son was 16.

More phone calls, more emails, more begging for vital information so I could prepare my still non speaking son. A pre visit two days before helped a little but still I feared a repeat of anaesthetic number 16. A new building, new staff, a different ward, a whole new team of anaesthetists.

This time there was no early rise or missed breakfast. Instead we left the house calmly at half past ten to drive the 40 minutes to the hospital. The ward was full of adults, none of whom had any complex needs like my son. There was no individual room or named nurse and definitely no play room. Instead there was long waits, feeling of being forgotten and no changing facilities!

Yet when the time came he walked to that room and let me count to 14 (his favourite number) then went out calmly. The wait for him to return felt never ending and seeing him in recovery was extremely distressing for both him and me.

But we got through general anaesthetic number 18 and I'm delighted to say that all is stable and for the first time ever what has been biannual now will become once every two years! By that point he will have been having general anaesthetics for ten years!

It’s taken 18 general anaesthetics to get to this place but getting news like that has been worth every needle, mask and cannula!