Day 5 - Meet my son Tom
The story starts when he was born with severe hydrocephalus, this is where the fluid we have in our brains fails to drain. Surgeries to place shunts followed and not surprisingly he “failed to thrive".
So he acquired an naso-gastric (NG) tube to top him up after his feeds. Unfortunately one full blown oral aversion later we admitted that the way to go was gastrostomy which he still has today. With no known physical issues to prevent him eating we started on the long slog to tempt him to eat. That could fill a novel!!
If you had been here for his birthday and seen how quickly his full portion of a ‘cheeky Nandos’ disappeared you would wonder why we are here. But the tube is still very much part of Tom’s life, as his oral intake is not sufficient for his needs.
In the early days it was hard not to let his tube feeding rule his and our lives. We didn’t know any other tube feeders, and hadn’t discovered PINNT, so everything we did was advised by his community nurses and based on hospital procedures. He had a lot of small feeds back then so going out could not easily be fitted in between feeds so we adapted to feed on the go.
Feeding happened wherever we were. Sitting in the parked car, on beach, while we ate in a cafe. These days Tom is understandably sensitive about who knows about his feeding tube so we are more discreet if we have to do a quick connection when out.
Obviously with a growing child regimes change and now Toms is planned with the hope that he will be hungry at mealtimes to encourage him to eat. Luckily he can physically tolerate changes to his daytime feed to fit in with the days plans. He can get anxious about it, so will talk it through first.
He’s just left College so there will be a change coming up. He’s been at a special school and then a special college with staff to do his feeds, but moving on to community classes and day activities he will have to have his feeds before he goes. He's not quite there with doing them himself. He can’t put the extension in his button or deal with some of the pump alarms. He can
sort out an occlusion alarm – which is great for me at 3 am on a winter morning when I hear the beeps of the pump starting up again.
Having no tube feeds between mid-morning and bedtime has advantages – we rarely have to haul feeding gear with us! Also he has learning disabilities so has to have someone with him but they don’t need to be tube trained. He will always say yes to frothy coffee and/or drink some water so hydration is not a problem.
Tom is very involved with Coventry and Warwickshire Grapevine. They have a group called Coventry Youth Activists (CYA) a group of disabled young people who are passionate campaigners for disability rights. They have moved online since covid. Their first campaign was “CYA on the Sofa” interviewing people about their experiences of lockdown and that it wasn’t very different to normal life for many disabled people - “not just for the pandemic”. Currently they are trying to talk to Nick Clegg at Facebook about stopping disability hate on social media.
Tom being Tom has infiltrated some of Grapevines other projects including helping set up a Doctor Who group. Which I think is sort of where I came in after sharing his birthday picture of him with his cardboard Alex Kingston on the PINNT page. This is the third one.
Tom is a huge fan. A couple of years ago we took him to see her in a play – a surprise so we said we were going shopping and he moaned all the way there. I went to get a programme and Tom being Tom started talking to the programme seller who very kindly told us where the stage door was. She was lovely and he got his own “hello sweetie” (one of her Dr Who catchphrases.)
Susan, Tom’s proud mum