Hospitals are strange places.
When you spend longer than a few hours in one, time seems to stretch and contract in different ways. You enter a suspended state of animation where the hours are measured by the next set of obs (temperature, blood pressure and oxygen levels – every four hours), other tests or the regimented mealtimes.
A trip outside the ward, even if it’s just to go get a coffee, feels like you have escaped illegally. Breathing in some actual outside air full of invisible pollution from the surrounding city couldn’t be better, even if it was fresh from the purest mountain resort.
When Twiglet rings to speak to me on the phone before bedtime, I hardly recognise his voice. It seems impossible that he can be my son too; he exists on a different plane to me.
Staff are wonderful at trying to make us feel relaxed and at ease but it is odd to have no responsibilities. I’m not able to make my child a piece of toast but I can tell them which size gripper needle to use.
Freed from the restraints of tidying or washing up I find myself more able to sit and play with Pudding, truly enjoying being in the moment with him. Together we race cars down the ramp, and give Mr Potato Head an extra three arms.
But once he settles in front of a film and I have read a book for a while, I find myself a little at a loss and end up surreptitiously tidying up toys in the playroom. (The wonderful play specialist would tell me off for not taking it easy but I can’t help it!)
We’re of course in a privileged position – unlike many stuck in hospital Pudding isn’t unwell. Far from it. Apart from objecting to being pinned down for the dosing and many subsequent blood takings – 11 in 36 hours this time – he’s been having a whale of a time. Running around with the other boys on the trial, kicking a ball up and down the corridor, mesmerising all the nurses with his curly hair and lightning grin. He even got an early birthday cake and balloon octopus!
We did have a bit of a worry initially, as his temperature went a bit high just before the dosing. I didn’t think I could bear having to cancel and come back the next week, but after we stripped him to his nappy, his temperature came down again and we got the go-ahead.
The trial team had all the emergency medications ready in case of a serious reaction, but everything went smoothly. The new port worked just as it should; they were able to draw some CSF (the fluid that surrounds the brain and spinal cord) for testing and deliver the new drug. Unlike the weekly infusions, it was over so quickly; almost the longest part being the need to clean the area thoroughly three times to minimise the likelihood of any infection.
So that’s it until next month. And the next few times we don’t have to have the blood samples done, so it will just mean two nights in the hotel and not having to sleep on the narrow pull-down bed. Hoorah!