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I’m sitting in the beach hut, and I’ll admit my mind is a little fuzzy. Two reasons, I suspect, for this: beauty overload; and too many chocolate fingers. They have nothing to do with each other, but both lead me to a bit of a spaced out state!

The sea and the sky are an almost white blue-grey today, and there is only the faintest horizon. I’ve already drafted two poems this morning and expect to do another before packing up for the day. This post, in truth, is me ‘holding back’ from the next piece. It’s not quite time to write it. Not sure why. But a little while longer coming to the boil is what’s needed. Maybe ten minutes or an hour, no more – or the pot boils dry and can’t, in my experience, be re-filled.

Our trip to clinic yesterday was useful, energising, and hopeful. We had done everything right with the new 45 degree sets except pinch the skin in order for the needle to get proper purchase on and guide the cannula in. We all watched carefully as our brilliant Diabetes Specialist Nurse (DSN) demonstrated the insertion on a blue cushion (no Manky!). And then E, with the same quiet clear-headedness and courage he has shown from the beginning of all this, did all the steps on himself.

His father and I watched as what looked like a huge needle catapulted into E, skimming just under the surface of the skin. Perfect. He peeled off the backing tape, removed the needle – leaving the cannula in of course – and voilà. One of his final sources of real distress conquered without any evident hesitation.

So far so good. We discovered two more options to try if these sets prove difficult or not right in some way – again, bless our DSN’s pragmatism.

But right now E is very pleased, as are we. Many more sites for sets will be opened up if he stays with them. And they are much flatter than quicksets.

And you know what: NO PAIN except a pinprick for a couple of seconds. Compared to the teeth-gritting and watering eyes of every set change in the last three months, well…. Any chance to not have to be QUITE so brave he welcomes. And lord knows we want him to take it.

— Posted in the Little Blue Hut

Oh, you know, these things happen….

Only when they happen TWICE IN A ROW — it’s irritating and a little unsettling.

So Sunday is an infusion set change day (when the site for the pump’s connection — how the insulin enters the body — is changed. This is usually done every 2 or 3 days). No problem. But all Monday E is high. We decide to do a set change again, just in case. E does it, and halfway through its first dose of insulin, it sends a ‘no delivery’ message. He’s high and therefore fragile, and a nice chicken dinner is in the oven and he’s starving.

We wrap up the by now served out dinner. M goes upstairs to read (she feels particularly helpless when something goes wrong and she can’t do anything. We tell her all will be okay).

The question is: How much insulin, if any, has gone in?

We decree a faulty set (how? why? no idea), and play safe: we assume half may have gone in. Change the set AGAIN and give roughly half the ‘owed’ insulin. Spend the rest of the evening wrestling with numbers, but it does look like some insulin went in before stopping.

Manage to enjoy dinner.

Last night: set change day again. AND EXACTLY THE SAME THING HAPPENS!

Only this time, he is actually sitting down with food. And I have to be out the door with M in under ten minutes (a school play). 

He and I decide he will use the old set (NB: pump wearers: never take out an old set until you are sure the new one is working!!!) to give the rest of the meal’s insulin and deal with it later. 

Again: How much insulin, if any, has gone in?!

Turns out probably about what the pump said had gone in. Two hours later and he’s a little low, but it had been a cross-country running day and these are always tricky to manage…

At 10.30pm, we remember about the set problem (after the play), and all decide we will try the new set again for breakfast.

We do, and again, IT STOPS MID-WAY THROUGH DELIVERY. 

Damn. Switch to the old set again, give the rest of the insulin, and off to school. Can’t change set because we won’t know if it’s working properly until after he’s at school…

Sigh.

Phone Medtronic, the makers of the pump — who, as usual, are absolutely brilliant. Like us, they come to the conclusion that we are dealing with a faulty batch or box of sets. We switch boxes of course, and wait for them to send us more. Problem is, the box we have is the same batch as the faulty ones, but oh well. It seems an inconsistent fault.

Medtronic are pretty wonderful. Always pleasant. So helpful. 

At least it doesn’t appear to be a pump problem.

***

But it’s a pain. And too many of these sorts of events lead to a feeling of being very unsettled, unsure. At least on MDI (injections) you know the insulin is going in. Not to know what’s going in is pretty darn scary, because you can’t know anything for sure for a couple of hours at least…

So far so good though. No desperate phone calls from school. And we’ll do another set change tonight. Before going out to see the play!

***

Lessons:

1) always keep in an old set til you know the new one is working

2) trust the pump

3) batches can go wrong, but it doesn’t mean the whole world is ending

4) never hesitate to phone Medtronic

5) remain flexible!

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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Distance Travelled

Disclaimer

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