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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.
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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!
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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!