gastrostomy

When the personal isn’t political

/ jess / 2 Comments

I don’t often write about overtly political topics. I worry that I’m not sufficiently informed and haven’t done enough research to have an opinion that I want to make public. But in the current political climate, where it seems the people who really should know what they are doing don’t, I’m going to weigh in on something.

David Cameron’s memoir, For The Record, is about to be published and of course the main story is about Brexit. I definitely do not know enough to put pen to paper about that.

He has also written about his son Ivan in the book and an excerpt was serialised in the Sunday Times last weekend (behind a paywall here). My son is different to his, but they both have cerebral palsy and having a disabled child is something I do know about.

Cameron writes movingly about Ivan’s birth and the difficulty of managing his health needs. He describes the difficulty of your child being anaesthetised for operations, having a feeding tube inserted and becoming expert in managing tubes and syringes. All of this rings true to me, including the new normality of feeding your child via their tube on trains and planes.

This is the reality of many parents of disabled children and he and his wife, Samantha, clearly loved Ivan and like all of us did what they could to give their son what he needed. They learnt fast and stretched themselves. They didn’t anticipate being parents of a child like Ivan but got on with it with grace and determination. Ivan’s death in 2009 was a tragedy and I can’t imagine how sad they must have been. The grief must have changed them in ways I can’t possibly realise and will never go away.

The way he has described the reality of his experience means I find it really hard to read his account of Ivan’s life without wondering how he has avoided making the personal political. 

Cameron writes about how difficult they were finding it to cope when Ivan was young: ‘I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.’ He describes how grateful they were for the help they received from children’s hospices. He recounts how he had visited a constituent, before Ivan was born in 2002, who had a severely disabled child and wanted his help with the lack of care her daughter was receiving and that he couldn’t have known that he would find himself with a similar child. 

It is rare for anyone to have sufficient power to effect real change but surely the Prime Minister is one of them. After coming to power in 2010 Cameron began a programme of austerity which saw the steady reduction of all services for disabled children. The government attempted to distance itself from the effects of its policies by claiming that it was up to local authorities to fund services, whilst reducing the money local authorities received so drastically that it was impossible for there not to be cuts. I am talking about services like social services, children’s hospices, physiotherapy, occupational therapy and specialist equipment amongst others. 

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My son was born in 2009. Our experience of parenting him has aligned almost exactly with the reality of austerity, and for us it has meant less of everything. All of the services we access have reduced. Our experience is not unique. 

My son, Ben, does not have epilepsy like Ivan, but he does have a feeding tube and is entirely dependent on us for all of his needs, night and day. I have never had a social worker come round and talk to me about the help that is available. My most recent experiences have been being unable to get hold of a social worker at all. We have been assessed and we are eligible for the following over a year: funding for two hours of help a week (at a rate that is less than market rates) and ten days of playscheme a year (9am-3pm). We used to get transport to and from the playscheme which is in another borough, but that has now been cut. We used to get occasional nights when Ben could stay at a children’s hospice but since the hospice receives no statutory funding and our local authority will not contribute, that has been removed.

The occupational therapy team that oversees equipment in our home is so overstretched that it is at least four months before someone can come and check the fit of Ben’s bathseat when it is uncomfortable for him. When we need new slings, so Ben can be safely hoisted from his wheelchair to his bed, our local physiotherapist tries to help order them on the NHS system, which is not her job, because otherwise he will spend months being hoisted in slings that are too small.

When Ben grows too big for his wheelchair we will wait up to three months for an appointment to get the wheelchair adjusted because there aren’t enough wheelchair therapists. When Ben needs a new walker, which everyone agrees is useful to help him bear weight and reduce the risk of hip surgery in future, we will need to fund it ourselves. Same with the positioning system he needs to sleep. There is not enough money for these vital aids.

The NHS and local authority therapy teams are full of talented, kind people working really hard in difficult circumstances with reduced budgets. Our local social services team cannot prioritise families like ours because they don’t have enough money to go round.

This is nothing to do with Cameron’s grief, which is personal and painful and not my business, but everything to do with his experience of looking after a disabled child. I find it hard to understand how he can recognise the importance of the care and support his son and his family received without acknowledging that those resources are no longer available. There are now children who don’t have specialist chairs to sit in at nursery because they are no longer funded, families that get no respite and need to fundraise for physiotherapy. Very few families are being proactively offered help from social services. For most people, the personal is political and few things alter your politics more than having a disabled child. Cameron appears to have separated the two things entirely.

Don’t feel sorry for me. We are privileged to have the resources to mostly get Ben what he needs and this isn’t about an individual. But please, feel really bloody angry on behalf of all the disabled children who were born after David Cameron’s son. Cameron was in a position of power and he ensured that all of the families with disabled children that came after his got less.

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A Blocked Tube

/ jess / Leave a comment

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.

Having a laugh in Trafalgar Square

/ jess / 2 Comments

We have recently been printing photos – mainly for a wall in our house where we have an ever expanding, slightly chaotic collection of family photos. There is currently not a single photo of Molly on the wall. She is almost two years old. We need to rectify this quickly, before she’s tall enough to see the photos and old enough to mind.

As I go through the photos on our computer, I get distracted by loads that will never make the cut for the wall. I like to think I am a decent photographer, but almost all our recent pictures are badly composed phone photos of non-compliant kids. So I force myself to focus more on the memory and emotion of when the photo was taken, than on the quality of the composition. Kids don’t care if the background is full of mugs and syringes, they just love a photo of them with their dad.

But this photo, I love:

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It is technically flawed, badly composed. But look how happy Ben is! And look at all the tourists wandering around behind him, oblivious!

This was taken during the summer holidays, just off Trafalgar Square. James, Ben, Max and I had just been to the theatre to see Horrible Histories at the Garrick Theatre. We had brilliant seats. Ben’s space was just off the foyer, at the back of the circle, so quite a long way from the stage but with a brilliant view. This is everything we look for in a theatre seat for Ben: wheelchair spaces in theatres are often right by the stage which he finds a bit much. There have been numerous times when we have had to leave a theatre early because Ben isn’t enjoying the performance. (His other pet hate is unexpected, roaming musicians in theatrical performances. He likes people to stay on the stage, not appear behind him playing a trumpet.)

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The rest of us had seats either side of Ben, and we all enjoyed the brilliant performance. The boys have watched almost every episode of the TV programme so we knew what to expect. It was genuinely amusing for all of us, with poo jokes interspersed with historical facts, and loads of songs. Who doesn’t like a rap about Henry VIII?

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After the performance we went to a café just off Trafalgar Square for lunch. We sat outside, with the pigeons, and put Ben’s ipod on while we were eating. Understandably, Ben gets bored if he’s just sitting around while being fed, and it’s not possible to talk to him or read him a book while eating a sandwich, so we always have a bluetooth speaker attached to his wheelchair (the pink circle by his head) which is connected to an ipod full of audiobooks. I think he’s listening to a David Walliams story in this picture.

I love the photo because how could you not love a kid laughing this much? But also in this photo I see all of the other ways in which I have changed over the seven years I have been his mother. At the beginning going on a trip like this to central London could be a bit daunting – how would we get there? Could we get Ben’s wheelchair in? Had we packed everything? Would Ben enjoy it? When Ben was very small I sometimes felt self-conscious about feeding him in public. I was really aware of how much noise we were making, and would have felt a bit anxious about playing an audiobook in a public place. I might have noticed whether people were looking at Ben, not because I was ashamed of him but because I was worried about him noticing them looking. Sometimes it felt like the logistics involved in getting us somewhere weren’t worth the risk that Ben wouldn’t enjoy it.

This trip was lovely. We packed what we needed (takes time, but we’ve done it hundreds of times) and drove in to the West End. We were a bit early so we had a coffee in Leicester Square. Went to the theatre, had lunch at Pret. Admittedly we had left Molly at home, as she would have added an unnecessary level of unpredictability to the whole outing.

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Not only do we now not care if people see Ben being fed through his gastrostomy tube, we don’t even notice if people are looking. If he laughs hysterically, loudly, we are chuckling with him rather than being self-conscious about other people noticing. If Ben needs to listen to an audiobook in order to not get bored, that’s more important than whether someone doesn’t want to listen to David Walliams in their lunchbreak.

And what this photo shows is that Ben has a brilliant time on these kinds of trips. We all do. He hugely enjoyed Horrible Histories, and now knows more about the naming of Saxon villages than he did previously. He is able to take advantage of us living in London.

And the general public in Trafalgar Square are largely too busy going about their business, admiring Nelson’s Column or grabbing a turmeric latte, to notice whether our son is disabled, or tube-fed, or listening to The World’s Worst Children.

This is the kind of photo I wish I’d had in a crystal ball when Ben was little and not enjoying life. I might laminate it and show it to anyone who gives us the pity-look and talks about how sorry they feel for him. Don’t feel sorry for him or us, he’s having the time of his life!

Feeding Ben Food

/ jess / 4 Comments

Ben can’t eat or drink. He tried really hard to learn and we all spent a lot of time on it for 18 months but by age two he really wasn’t enjoying it. He got annoyed at the sight of a spoon and the amount he was eating was tailing off.

Drinking had been a problem right from the beginning. His dysphagia (difficulty swallowing) meant he found sucking from a bottle really difficult – if the automatic reflex to co-ordinate sucking, swallowing and breathing is messed up, it is incredibly hard to learn. The human anatomy at the back of the throat is an awful design and Ben just couldn’t get the hang of it. We spent hours trying to feed him by bottle, and later by cup but it was never enough and he was discharged from hospital with a nasogastric tube which we put milk through (the tube went up through his nose and then down in to his tummy).

At just over four months we started weaning in the hope that eating thicker textures would be easier than drinking and be more likely to stay down in his tummy. This was also hard work for Ben and he did incredibly well given the difficulties but he never got close to eating enough food to grow. Meanwhile he had constant and painful gastro-oesophageal reflux.

So at six months old Ben had a PEG inserted in to his tummy, allowing us to give milk through a tube straight in to his stomach. When he was two this was changed to a button.

If you start out from the position that you have a small child and they have to have a tube inserted in to their tummy, which means even when you have given them a bath and they are lying on a towel all perfect and clean they will still have a tube dangling from their abdomen, this might be upsetting. Which it was in some ways. But if you start from the position that your child is unable to feed and you have spent six months putting milk through a tube in their nose which everyone can see, and keeps falling off/out, and their cheek under the sticky plaster is red raw, and when the tube needs replacing you have to get someone (sometimes your poor neighbour) to bind your screaming child in a towel and hold them down while you push a tube up their nose and down their throat, and every time you feed them you have to do a pH test to check the tube is still in their tummy and you aren’t about to pour milk in to their lungs… if you find yourself in that position, then a permanent tube in their tummy seems like a great idea.

James and I have fond memories of a holiday in Scotland when Ben was 18 months old when he could eat half a yoghurt pot for lunch. That was the highpoint of his eating and once we returned to London the combination of physical difficulty and chronic reflux meant he was less and less keen to eat food. To be honest, we were all weary. There are only so many hours you can spend mixing various mashed and pureed foods with baby rice and spooning them into an unwilling child before you feel there are better ways to spend time. Eventually we got to the point of not offering Ben oral food at all.

That gastrostomy tube is a lifeline – it is the reason that Ben is thriving and growing. It represents a choice to spend time reading books and enjoying ourselves rather than trying for hours to eat enough food and drink enough fluid and the inevitable chest infections that would result.

So for the first three years of his life, Ben was largely fed milk – various hypoallergenic, cows-milk-free and enhanced formulas that began to arrive in big boxes every month. As far as dieticians and general medical opinion is concerned, once a child has a tube they are then fed special milk. So on the one hand you have a typical four year old who eats some cereal, a banana, some chicken and maybe a cake. On the other hand you have a tube-fed four year old who is supposed to have 240ml Nutrini Energy milk for breakfast, 240ml Nutrini Energy milk for lunch and 240ml Nutrini Energy milk for supper.

A few years ago I came across ‘blended diet‘ (BD) which essentially means pureeing food with enough liquid to be able to push it through the gastrostomy tube. I am a natural law-abider (the kind of person who feels uncomfortable going in to a pub to use the loo if I haven’t bought a drink, who scrupulously observes any and every queue) and so having found an academic journal article that suggested children had experienced less reflux and eaten more while being fed puree rather than milk, I approached each of our doctors and asked their view before I started. They were generally a bit bemused but didn’t tell me not to. We started putting Ella’s Kitchen baby food pouches through Ben’s gastrostomy tube.

It’s not a complicated idea – we followed principles similar to when you are weaning a baby. We gradually made more complicated purees and replaced quantities of milk for boluses of puree. Our dietician made clear that she could not advocate this type of feeding (she is prevented from doing so by her professional organisation) but was happy to discuss principles with me. She analysed our recipes to see how much protein, carbs etc Ben was getting and suggested supplements.

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Ben is now fed entirely puree. Instead of being pumped full of high calorie milk with a 12-month shelf life he is fed a bespoke recipe of roast chicken, homemade chicken stock, tahini and avocado whizzed up in a high-speed, super-powered (obscenely expensive) blender. Since we have been doing this he vomits less, has fewer reflux symptoms and has been putting on weight (albeit slowly, but that’s always been the case). We add calorie and vitamin supplements to the blends. Doctors comment on how well he looks and how sensible an idea this is.

Through this process, I have rediscovered some of the mothering instinct that should be part of feeding your child. There is no pleasure in hooking up milk to a pump, but there is real and tangible satisfaction to be gained in roasting a chicken, making stock and feeding it to your child. There is enormous joy to be found in buying blueberries in the morning and giving them to your child in the afternoon; to seeing your child grow as a result of the food you have made with your hands even if it doesn’t arrive in their tummy via their mouth.

Health professionals (mainly dieticians and nurses) are concerned about this method of feeding – they are apparently worried the tube will get blocked (this has never happened to us), that there are problems with food hygiene (which the rest of the population manages when feeding their kids). They are uncomfortable that you can’t be sure how many calories are in blended foods. These concerns are such that our nearest respite centre refuses to give children puree via gastrostomy, and therefore Ben can’t stay there without us being there to feed him (which with the best will in the world, is not exactly respite).

It seems to me that a model of care where children automatically have long-life milk for every meal is better suited to those analysing calorie requirements and setting up pumps than it is to the recipient. I resent the idea that most parents feed their children what they want, with some public health encouragement to maximise vegetables, but us feeding Ben kale and quinoa rather than milk full of maltodextrin is somehow rogue. The world is upside-down when goody-two-shoes-Jess is seen as a rebel.

We all make parenting decisions for our kids. Our choice is to feed our son actual food.

‘I feel sick’

/ jess / 3 Comments

I am having an incredibly boring couple of days. Ben has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Max ‘settling in’ to a new nursery. Obviously Ben can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Max’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Ben is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Ben so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Ben had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Ben would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Ben’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Ben after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Ben could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Ben hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Ben has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.