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Yes, it’s been a bit like that: like ha ha let’s play ping-pong…

Sigh. Two nights ago E is 10 mmols at 12am. I do a correction dose, thinking okay not  bad number, little unusual to be that high 4 hours after eating, but hey… Then at 3 am I hear him coming to our room. He’s big now, bulky in the doorway like his father, and for a moment I have no idea who it is! Then he says, I’m 24 mmols and feel absolutely awful.

A sudden spike like this hasn’t happened in a number of months. And of course it would happen when R and I are both hammering through huge piles of work — markings, plans… Hence why I’m up at 12am testing him!

Anyway. Nothing to be done. All hands on deck. Check pump is working as far as we can see — fine. Give whacking huge dose of insulin (what the pump recommends plus a whole extra unit) and put him on 200% temp basal (eg twice the amount of insulin he normally has dripping in per hour).

We wait for the insulin to take proper effect, which we know will be about an hour and a half. Meanwhile E feels sicker and sicker, and then, with awful predictability, begins to throw up. We know he has ketones. He tries to drink water, but can’t keep it down.

An hour later his level has hardly come down, 22 mmols. This too is not unusual — with such a high, the body can become resistant, and it takes more aggression with insulin to lower things than it normally would. To cover all possibilities (in case something invisible is wrong with the infusion set currently in him), we do a set change. E as usual does everything himself, but we can see it takes everything he’s got, as he fights to do it between bouts of retching.

We correct again, again overriding the pump (which remembers what it gave an hour ago), in case some of the last correction dose didn’t actually make it in (in case the set was faulty: see the inexact science of all this! All guess work! And too much insulin of course will send him crashing into hypo, so you just do it and pray…).

It’s pretty dire. My heart breaks for him. He’s so exhausted he dozes off, and so I go back an hour later: 11 mmols, a massive drop.

Phew. It’s over. By this point it’s 5.30 am, and we are due up in an hour. I go back to bed, fearing that with all that insulin sloshing around yet to take full effect, he will be hypo in an hour. But I’m desperate for sleep.

At 6.30 am, he is 8 mmols. Not hypo. Phew again. Made it.

Poor E soldiers on. He gets up, gets himself out for school.

We can only think this is all from his cold. Which drags on and on: cough, chest, nose. I’m watching him closely for infection. He’s not 100%, but surviving.

So yesterday at school he begins to go high again, but manages it himself: overriding the pump for a correction dose, and putting himself on 120% temp basal all day. He wrestles his levels down… And we hear nothing about it until we are all home last night.

It’s hard to overstate the pride I feel in his grit. For getting through the night and pressing on, but also for then making his own decisions, the right ones, yesterday.

It’s also hard to overstate the grief I feel for a future where he will have to make it through nights like that on his own. He will have to do this stuff with no one beside him.

Once again I turn away from this thought. I can’t make it better, ever. I never wanted my children to have to be this strong. Yes — like I had to be. Those who know me will know what that means, and those who don’t will just have to believe me. So if there was one thing I wished for my children, it was not to have to deal with big heavy life too soon.

But life has dealt us this hand. This arbitrary hand. And our children will have to endure. E will have to endure things that most can’t imagine. The potential toll on his mental health, not to speak of his physical health, grieves me. My children will have to be unusually strong unusually young. Like too many, it must be said. Still. Why can we not protect our children?

***

I know that they will make it. Are from stern stuff, whole stuff, sound stuff. And they have us, who have with every fiber tried to give them what they need not to feel too alone too much of the time…

I know all this. But it all seems just something I tell myself to feel better when it hits me in the middle of the night.

 

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Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.