Brain surgery

Sam had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

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Sam spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Sam to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Sam’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Sam never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Sam with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Sam knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Sam was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Sam’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

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When Sam has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Sam well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Sam and someone with Eli, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Sam and for Eli be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Sam wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Eli started visiting Sam at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Eli’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Sam, that he was having brain surgery, that we hoped it would help Sam control his muscles. His first question was, ‘Will Sam be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Sam, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Sam for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Sam in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Sam being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

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Sam and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Sam wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Sam wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Sam and her just before his surgery). Along with looking after Eli for days despite him almost continually insulting her.

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It will be okay

So here we are. We’re on Day 9 and Sam is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Sam’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Sam and Eli jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Sam is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Sam was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Sam’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Sam and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.

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Fear

Sam has a phobia of dogs. Or at least, we first noticed that he was scared of dogs. Then we found it was also cats, then foxes, and guinea pigs. And chinchillas.

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For a boy who has very limited communication, Sam found a very effective way to express his disquiet upon seeing these animals (or, as time went on, pictures of them): by gagging or sometimes actually being sick. Maybe the whole thing started because he happened to be sick when a dog was around, so the two became conflated in his mind and seeing a dog triggered vomiting. Who knows – Sam can’t tell us.

Either way, it started last summer and got progressively worse. At the beginning Sam would gag when we saw dogs in the park. Then he gagged at some dogs in TV programmes, sometimes being sick. Then it grew to include drawings in books, or dog-like bears, or cats. And plastic toys of animals. And TV adverts for plastic toys of animals. We sent the ’12 Dogs of Christmas’ DVD which someone gave him as an unfortunate but well-meaning present to the charity shop.

We get worried about Sam being sick for a whole number of reasons. Nutrition: because he needs all the calories he can get. Safety: because he chokes easily. Health: because he is prone to chest infections and repeated vomiting could lead to aspiration (breathing in stuff which doesn’t belong in lungs). And mess: because he tends to be sick on his chair or carpets which is a pain to deal with.

We got to the point where we would avoid or switch off TV programmes or books that had characters that triggered a reaction. One morning, a rogue TV show slipped through and Sam was so sick that we had to let the bus go and I drove him to school once we’d washed and changed him. He was unable to engage at all with the mobile petting zoo when it visited his school without gagging. He started gagging when we told stories about him gagging earlier in the day when he saw a dog. So much gagging.

It was having a significant negative effect on our day-to-day lives and we were wondering how to get some help. By coincidence, we saw a hospital psychologist about something unrelated and she arranged a course of therapy for Sam at the hospital with a trainee psychologist. We were very lucky to be offered this – the difficulty of access to Child and Adolescent Mental Health Services is well documented and I doubt we would have got such personalised treatment as quickly or easily if we had waited for a referral.

We have just finished a block of sessions where we worked with the psychologist to draw up a hierarchy of Sam’s fears – with talking about dogs with him in earshot at the bottom, through to him stroking an actual dog at the top. We figured that we’d focus on dogs and hope the chinchilla fear abated as a result.

Already, Sam has clearly demonstrated that he can learn to manage his anxiety – stories and pictures which made him gag the first time he heard or saw them are okay after a few weeks. We still have a way to go but are seeing real progress. I inadvertently tested this in our local shop last week. I went to get some milk and when I came back Sam was gagging for no apparent reason. Then I noticed I had left him directly opposite a card rack which featured literally nothing but photos of dogs! A few months ago he probably would have been sick, but this time we talked about it, and he recovered really quickly. You wouldn’t believe how many dog images there are in the world once you start looking for them.

It’s not going to be linear progress; Sam is now okay with the cat that visits our garden, but gags when we read him a new story about a dog. But we can now envisage a time when we can go for walks in the park without being on high alert. We’re currently on holiday and have been to a farm park* where Sam happily saw and fed goats, sheep, horses and turkeys. This is huge progress compared to our visit to a Miniature Pony Sanctuary this time last year which Sam DID NOT LIKE.

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What the therapy has made clear is that it is us adults who need to change our attitude as much as Sam. By immediately turning off offending TV programmes, or generally panicking at the first sign of Sam being sick, we were confirming to Sam that there was definitely something to worry about: these dogs must indeed be truly terrifying if all the grown-ups are so keen to get rid of them. We did all of these things for good reasons – it’s entirely justified to want to avoid Sam vomiting – but we were ultimately making things even worse and have had to retrain ourselves in how we respond. We also have to try to re-educate Eli, who has become so attuned to the problem that he shouts ‘DOG, DOG’ at the first sign of a canine, which isn’t hugely helping.

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As with so much of parenting, it’s all about being calm and consistent, about forcing oneself to demonstrate to your kids that everything’s going to be okay even though they are scared. We have to risk Sam being sick. We can’t carry on visiting people’s houses, finding out as they open the door that they have a dog, and introducing ourselves by Sam threatening to vomit on their 100% wool rug.

When going through this process, we also have to bear in mind Sam’s consent. On the one hand, we are trying to improve Sam’s quality of life by helping him overcome the feelings of anxiety he gets when he sees or hears dogs (or cats, guinea pigs, bears…). But it’s perfectly reasonable for him to not like dogs. We have to respect his right to really not want to look at pictures of dogs for fun, or to be able to say ‘No’ if he’s terrified. Eli hates lawnmowers – we don’t make him stand around next to men mowing lawns.

We are treading a narrow and tricky path between pushing Sam’s comfort zone a bit, while respecting his right to move at his own pace. Ultimately, he should be able to express a dislike of dogs, or anything else, and have that view acknowledged. We would just like him to be able to express his dislikes like he does with other things he hates – by whinging, or sticking out his bottom lip, or loudly protesting – rather than puking all over us all.

* We went to the Cotswold Farm Park which was brilliant – easily accessible for wheelchairs, loads for both boys to do, and Sam particularly loved their maze. Unlike the Model Village in Bourton-on-the-Water which lets in those ‘confined’ to wheelchairs for free because they can’t actually get to any of the model village. Which would be sort of okay if they didn’t charge the rest of your family full price and be insulting and grumpy about the whole thing.