A Blocked Tube

Ben’s gastrostomy tube blocked last week. I’m not sure why – perhaps a rogue lump of crushed medication – but it’s normally not a big deal. We keep a spare button at home and I can replace it easily. I do this roughly every three months anyway, and have been doing for the last seven years.

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(Unrelated selfie of us all having lunch at a service station to be thankful Ben’s tube was working fine on our nine hour journey from London to Lancashire over the summer.)

Ben doesn’t eat or drink. He has a gastrostomy which means he has a ‘button’ in his tummy which we connect a tube to on the outside and then conveniently push fluids, food and medication directly into his stomach on the inside. It is a simple yet amazing piece of medical engineering which allows us to feed him while bypassing his mouth.

The button is kept secure by a little inflatable balloon which sits inside his stomach and prevents it falling out. To change the button I can use a syringe to suck the water out of the balloon, except last week the valve that I connect the syringe to had fallen out. We found it in Ben’s clothes and replaced it, but it was bust. Not being able to deflate the balloon meant the blocked button was stuck there, which meant Ben couldn’t have the remainder of his breakfast nor any other food or water until we sorted it out.

These are the kinds of unexpected situations we find ourselves in. Compared to his button being tugged out of his stomach in Sussex and our only replacement being in London, or the horror of needing to reinsert nasogastric tubes when Ben was a small baby, this was not that big a deal. We haven’t had to do an A&E run for a while which has been good, and this wasn’t something we were very worried about. Ben was fine as long as we entertained him. We live close to a hospital so we packed some electronic entertainment devices and headed there to find someone who knew how to solve our problem. We took Max with us since his school is close by and reassured him that everything was fine. He didn’t really believe us because it’s not that normal to accompany your brother to hospital before you go to school.

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As we arrived at A&E, nice and early so mercifully quiet, James said, ‘I bet there’s some really simple low tech solution to this’. I called the specialist feeding nurse whose number I still had from when she had first taught us how to feed Ben by tube and as we were called into triage she was telling me we just needed to chop the button in half with scissors just next to Ben’s tummy. The balloon would deflate and go into his digestive system as if it was food, the stoma would be clear, and I would be able to pop a new button in. I explained this to the A&E nurses, and then to the doctor, who had never come across this problem before. Within twenty minutes, just as a nurse was checking I was happy to cut the button myself, the feeding nurse appeared with some scissors. She cut, I pushed a new button in, and we were back in business. Next time we’ll know what to do.

As I got Ben back in his wheelchair, the feeding nurse reminded me that when Ben was a few months old there had been a problem with his nasogastric tube and I had called her. She had been at home, trapped by one of the numerous snowstorms that were the hallmark of Ben’s early months, but talked me through what I needed to do. 

I had forgotten that occasion, but I remember calling her. I always called her when we had a problem with his feeding tubes, because of all the people we met in those early months she was the one that could offer us the most helpful advice. She knew all that we needed to know about feeding Ben and always answered the phone. When I was struggling to pump breastmilk she put me in touch with another mother who had been through the same. When the end fell off his feeding tube she explained how to fit a new one. When Ben’s gastrostomy was infected she would arrange for it to be swabbed. She was the person we needed at that time. Most other people we saw then either never dealt with a gastrostomy, or did occasionally whereas feeding tubes were this nurse’s bread and butter.

And now, almost ten years later, she solved our problem again whilst commenting on how big Ben is. He’s big because we’ve been feeding him though all of these various tubes which she helped us to feel were manageable. 

James had delivered Max to school mid-button chop so we phoned the school office so someone could tell him that Ben was totally fine, then James drove Ben to school. Crisis efficiently averted. There was a simple solution. Hurrah for the people who know the solutions and always answer the phone.

A trip to Westminster

I didn’t realise quite what a difference it would make to our lives once Ben was at school. We’re now coming to the end of his first year of full-time school, and it’s been bloody marvellous. The thing about having a very small disabled child, who’s at home a lot, is that you are responsible for every almost every aspect of their lives; what they’re doing, who they’re doing it with, what they’re learning (or not), how much variety they have in their days. Even with the aspects that aren’t entirely down to you, you are still the one providing taxi services or co-ordinating appointments, having conversations and arranging outings. It’s a lot of pressure and hard not to take things personally.

If you are lucky enough to get your child into a really good school (via interaction with your local Special Educational Needs department, which is bound to be stressful), a significant chunk of responsibility is lifted from your shoulders and you are handed back whole swathes of time. 5-6 hours a day to be precise.

Of course there’s still a lot to do and arrange. And there are school holidays to fill. But every day during term time, your child is with people who are teaching them, playing with them, taking them to go swimming and to other interesting places.

Ben’s school celebrated the election of a new parliament in May by going on a school trip to Parliament for all of the children who are part of the MOVE programme, which is all about integrating physical tasks, goals and skills in to the school day and is designed to involve the expertise of everyone who works with the children – parents, teachers, therapists, classroom assistants and others.

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Ben’s MOVE goals focus on him sitting unsupported and standing for short periods of time. Being part of the programme means practicing these skills every day at various points throughout the day. The idea is to go beyond just working on this in designated physiotherapy sessions. It a great idea, and Ben’s ability to sit with less support has improved noticeably over the last 6-9 months.

The outing to Westminster was to celebrate the achievements of all of these kids, and where better to take them for a treat than to the heart of power? The place that, for a group of eleven disabled children, ultimately determines so much of their lives, from education and transport, to benefits and healthcare.

If I decided to take Ben on a trip to Westminster, it would be a big deal and I would spend a lot of time planning and fretting. The idea of taking eleven children in wheelchairs, eleven staff and all of the necessary bags on the tube, in order to make an appointment time with an important person would send me into some kind of collapse. But that’s what the school did – cheerfully and enthusiastically. Presumably somebody was planning and worrying, but they gave the impression of easy calm. They even, in the spirit of MOVE, got all of the kids out of their wheelchairs on the tube to practise sitting on seats. Brilliant! Nuts!

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I met the party at the Houses of Parliament and we went though security – all lovely slopey ramps, friendly frisking and smiles for the army of wheelchairs. We went through to New Palace Yard where we were met by Neil Coyle, the very newly-elected MP in whose constituency Ben’s school sits. He’d only had a couple of days to familiarise himself with the workings of the Houses of Parliament but he got us in, and happily chatted to us all, kids included. You could not meet a more welcoming MP.

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There’s a video here.

I love the idea of politicians and their colleagues coming across these kids as they walk through the Palace of Westminster. I got by far the best bit of an ambitious day – just swanning in for the photos in front of Big Ben. What a luxury for me – none of the anxiety about logistics or whether Ben would be happy, and all of the fun of the adventure. But mainly, lucky Ben!

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(Surprisingly hard to fit my large head, Ben’s wobbly head and Big Ben in a selfie.)