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.

7CC10AA3-2D12-462C-883C-148E61C78094

(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.

IMG_5785

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.

The Twits

The time has come to elaborate on the ‘stories’ part of ‘Stories with Ben’.

Ben loves stories. He’s always liked books. When Ben was almost one year old, we were on our way back from a holiday and due to huge snowstorms and a perilous motorway we made an unplanned stop at my sister Maddy’s house in Nottingham. At midnight Ben woke and was really struggling to breathe. My sister and her boyfriend got up to show us the way to the nearest hospital, where we carefully walked over the ice to reach A&E. As soon we mentioned breathing problems in a child with cerebral palsy who was not yet 1, we got whisked through to a bed where they gave Ben some drugs and a nebuliser. We were surrounded by doctors and nurses, Ben was very distressed and his breathing was really laboured.

While James briefed an Intensive Care doctor on Ben’s history, in case he needed to be sedated and ventilated, a nurse suggested I sit with Ben for a bit and do something he enjoyed to see if his breathing calmed down. So we read The Very Hungry Caterpillar. Ben smiled at the list of food like he always did, and by the time the caterpillar had become a butterfly Ben’s breathing was much improved.

The nurses said they had never seen a more dramatic response to a book.

IMG_7948

After school this afternoon I put Ben into his Brookfield chair (new, less supportive than his normal chair so he has to work a bit harder, a bargain at £750) and offered him a choice of four books to read, all of which he knows well: Sir Scallywag and the Golden Underpants, Watch Me Throw The Ball, Shifty McGifty and Slippery Ben and The Twits. He knows all of these books well – particularly the first three which are fun picture books.

IMG_7951

Ben chooses by looking at the book he wants. He chose The Twits by Roald Dahl.

The Twits is a more recent addition to our library. As I mentioned previously, Ben’s a big fan of an old video on YouTube of Rik Mayall reading George’s Marvellous Medicine. His uncle Harry then bought him a box-set of every Roald Dahl childrens book and we’ve been working our way through them.

IMG_7936       IMG_7937

I think some people wonder how much Ben understands, how much he can learn. The kid chose the book with barely any pictures, no colours and a lot of words. He bloody loves stories. Even when his brother is trying to run over his hand with a truck.

IMG_7940

An hour later I found Max sitting in the chair, drinking milk and watching TV. How many other kids get to relax unsupervised in furniture that valuable?

(Apologies for blurry phone photos – hard to take high quality pictures when you’re busy reading)