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 tale of two flu vaccines

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Bridget Christie is a comedian that I love and earlier this year we went to her show about feminism, ‘A Bic For Her’. She did a bit about how people criticise feminists for having no sense of humour, but that actually the lack of equality for women is really serious and no-one ever says Amnesty International isn’t funny enough; it’s okay to be serious about stuff sometimes. Ironic that Bridget was being funny about feminists not being funny, but anyway…. I love to laugh but sometimes stuff is just annoying and there’s not much to find amusing. This post is a bit negative. I’ll chirp up next week (hopefully).

[Aside: I wrote Bridget Christie an email afterwards and she replied saying ‘it made me laugh SO MUCH’ which made really very, very happy. If you know me in real life, I will have told you this story. I tell everyone this story.]

The NHS is offering the nasal flu vaccine (Fluenz) to all 2 year olds this year. I made an appointment for Max to see the nurse at our GP surgery, she sprayed it up his nostrils, he said it tickled, we left. Done.

Ben has a flu vaccine every winter because he is vulnerable, even minor illnesses will affect him badly and it takes him a long time to recover from bugs. Ben starts vomiting at the first hint of a fever, he struggles to manage secretions at the back of his nose and throat and loses weight quickly. The vaccine won’t necessarily stop Ben getting flu, but it will hopefully reduce how sick he gets with it.

So I made an appointment for Ben to see the nurse at our GP surgery.

She looked at his computer record and noted he was allergic to eggs. This is problematic because Fluenz is made using egg. I explained that he had Fluenz last year and had no reaction, that he has never had a reaction to egg, but has routine skin prick tests because he had a cows milk protein allergy when he was younger. According to these tests he is mildly allergic to egg white.

The nurse phoned a GP in the practice (unfamiliar to me) who was unwilling to agree to Ben receiving the vaccine right then so I suggested I get in touch with Ben’s allergy consultant (based at a hospital) to see if she could advise. Off we went.

I had an email exchange with the allergy consultant and she agreed to write a letter to our GP saying that in her view there was no reason for Ben not to have Fluenz this year since he had it last year with no reaction. The letter took a couple of weeks to arrive. The consultant offered to give the vaccine to Ben in hospital but that would mean Ben missing school.

In the meantime I got a letter from Ben’s school saying nurses would be visiting the school on Friday to give children the flu vaccine. Brilliant news! A rare opportunity for things to come to us rather than us trundling around to various clinics! I filled in the consent form explaining the egg/Fluenz issue and then forwarded the letter from the consultant when it arrived.

Yesterday the nurse in charge of the school vaccination programme called me. I launched in to a historical monologue involving much mention of eggs, noses and doctors, concluding with the fact that surely, therefore, Ben can go ahead and have Fluenz on Friday.

Apparently not. The nurses going in to schools are unable to give the vaccine to any children with an egg allergy, mild or not. She suggested I make an appointment with our GP (not a nurse) to discuss it and see if the GP is willing to approve Ben having the vaccine.

This lady was friendly, chatty, warm. Everyone we have interacted with about this so far has been helpful within their realm of power. Obviously they are being cautious because it would be awful for a child to have a serious reaction to the vaccine because they’re allergic to egg.

But I found myself crying on the phone to this nurse, trying to talk as little as possible so she didn’t realise, because why do these things always have to be so bloody time consuming? Why are our lives filled which such a huge amount of crap, involving multiple calls and trips, when time is already limited? It’s no-one’s fault but it’s exhausting.

When I called the GP surgery to explain this saga, the receptionist was great and found us an appointment later this week after school with a GP who I have known for over twenty years, who can give the vaccine himself if he’s happy to proceed. I am hopeful about that being the end of it. I saw this GP last year when I needed a ‘Fit to Fly’ letter for Ben. I had written the letter in advance to minimise his workload – the GP took this letter from me, scanned it with some magical software which converted it to text, put in on his letterhead, printed and signed it within five minutes. Anyone who has interacted with NHS bureaucracy will know that is miraculous!