Monsters In The Night

It’s funny how something completely not actually that good, can become good news. Can I ask for a round of applause for the boy, who has now made himself complex enough to warrant a specialist nurse when we visit the hospital? And we know her, she knows us. We love her, she loves the boy. She will provide us with a crutch, an ear to listen, a role to advocate. In the disappointment that our local children’s hospital doesn’t do Nectar points, this is a real pick me up.

So what’s he done to get himself on the scroll of Children Worthy? Well, there’s the monthly admissions. It’s getting to be a real drag, but thankfully with each one he takes it more and more in his stride. Possibly because we also now realise we can’t faff around at home sorting it with calpol and acting all Dr Ranj. When he goes down, he goes down fast, and it’s eventually dawned on us (and luckily the doctors agree) that early intervention is key. A few bouts of the belly wobbles and he goes as parched as Lawrence of Arabia, we struggle to keep on top of his fluid balance and somehow the boy without an inch to spare can drop over a kilo in weight. 10% of his fighting weight, and that in turn does very unusual things with all his blood levels.

So that’s what took us in this week right? I wish. This week required a journey in an ambulance- not a hurried affair, no flashing lights but because my precious child has been invaded by something new. It’s called a monster by many sufferers and their families. Rufus had two seizures. No obvious temperature, he was a bit out of sorts preceeding them, but they were present and correct. So far there have been the two, and they were brief and apparently caused him no ill side effects. In fact, it took Wolf and I a minute to recognise the first one. Mistaken initially for a puppy dream, when we realised it took us near on two minutes to rouse him from it. It was 10.30pm, caught on my forehead kissing duty before going to bed. He fell asleep peacefully after it, and we agreed it best to not disturb him and just observe him on the hour through the night.

Then the second, something told me to go up and check on him whilst napping. And I saw the monster was there again. And I panicked slightly, but if having a child like Rufus has taught me anything, it’s to step outside myself. So I went and fetched my phone, and I caught it on video. Hands shaking, I felt like a voyeur. But I knew I’d be asked repeatedly to explain this, and how true to actual events would my retellings become. And how, honestly, can you translate it into words? I’d phoned his team of Doctors in the morning, and the community nurse team. And now here I was, in the aftermath, ensuring the boy was back, emailing them my dirty little video.

I was alone in the house, he had recovered. I’d requested the nurse team to come out, asked if they could test his blood sugars. I wasn’t going to take him in to hospital, it felt odd when he was sat up playing again. That’s the thing about having a complex child. Sometimes you just don’t want to put them through it again, put us through it again. You get ideas above your station. You are asked to be a parent and carer, so half the time you’ve played out a hospital visit in your head before you’ve got there. But I knew it was risky to put my two young children in a car and drive them when he’d been unpredictable already, so with gut churning guilt I dialled 999.

It was the right thing to do, you’re probably smacking your head with the palm of your hand as to how obvious that was. We found out about the weightloss, we got more answers as to what imbalances were happening inside him, and under observation we saw he didn’t have any more. Yet.

But with this last admission I felt a sense of accomplishment. And I realised with my impending return to work at the end of the month, that I really haven’t been on maternity leave at all. I’ve been working pretty hard, I’ve sent many emails, chased many people by phonecall. This business of Rufus, and Team D, has been a well oiled machine. So this stay the medical professionals could talk to us having seen the evidence, I walked corridors to find people in person, I didn’t have to rely on anyone going off to do that referral ‘now’. ‘Now’ is used loosely and incorrectly in hospital. So you see, having a right hand woman to help with this is very, very good news.

As for the Monster, we live under it’s shadow now, ready to record it’s frightenings. Our boy is difficult to unpick- his world is off the beaten track, and he’s a quirky wee soul. So what’s a quirk, what’s a tic, what’s something more sinister? As long as they leave him relatively untainted for some time I’m happy with that. Our shelf in the fridge couldn’t hold many more medicines. But we’re becoming a bit more prepared for it visiting. Like the Tiger Who Came to Tea, we’ve packed a bag full of tiger food ready to go when the hat drops.

RD is more concerned about other monsters attacking him in his sleep...

RD is more concerned about other monsters attacking him in his sleep…

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One response to “Monsters In The Night

  1. Oh goodness. How scary for you all. Boo has had seizures (infantile spasms) so I have one of those dirty little videos too. They are vital. In Boo’s case the seizures stopped 8 months ago, but statistically I know the odds are stacked in favour of then coming back. But you have R’s back and that will help him and I think getting a specialist nurse is a great achievement. Hang in there

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