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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

There are a lot of things this title could mean: I think we might all automatically think of post not being delivered. And with all the flight problems at the moment, there are no doubt countless things that cannot be delivered.

However, this is also the message which has popped up on E’s pump no fewer than FIVE times in the last four days. What this means is what it says: insulin is not getting through.

Fortunately we have so far avoided real disaster. And we are thanking our lucky stars that we didn’t have this circus last week while on holiday.

The main, and I would go so far as to say the only, down side of the pump is that when it malfunctions or something is dicky about it — it really is bad news. When this happens, chances are there is little insulin AT ALL in the body. And those of you who have been paying attention in biology will know that in people with type 1, no insulin spells dangerously high blood sugar levels — very, very quickly.

So far, out of the five problem infusion sets (because that’s what it seems to be, see below), E has only suffered one nasty spell, in which he felt terribly ill, very sick, and had high ketones. This in a matter of several hours, and with a high reading of only 16mmols (considering he was 30mmols when diagnosed, this seems incredible. But it tells you how very important ANY amount of insulin in the body is — because ANY insulin means that SOME glucose can be metabolised, and thus conducted out of the bloodstream, thus continuing this vital cycle. When NO insulin is there to conduct this metabolising, things escalate frighteningly quickly, and at surprisingly moderate blood sugar levels).

This is a point worth making: when blood sugar is 14mmols + and there is is little or no insulin running around in the body, then anything can raise the blood sugar levels further, even things which would lower it with insulin present, eg exercise. This came up the other day when talking to someone about the difficulty of negotiating long walks with E’s type 1. Can’t you just make sure he eats?  was the question. A sensible one, because then the starting blood sugar would be higher, thus in theory reducing the chance of going low on the walk.

Well, sort of. But if the blood sugar is too high without any insulin present, it’s dangerous. Exercise will push it higher. Because the body has no way of bringing it down without insulin there to smooth the way. (For example, see last post: E dropped from 17mmols to 6mmols in 20 minutes with exercise — but that was because he took a correction of insulin. With enough insulin in the body, the blood sugar level can lower.)

But it’s getting the insulin IN which has been problematic of late.

This is not a new problem. We have been bothered by funny sets since the New Year, when E bravely set out to spread his sites around.

We thought, and Medtronic (the makers of the pump) thought that the problems may come from dodgy sets. 

This now appears not to be the case. After a long talk with an incredibly helpful technical rep at Medtronic, we have come to the conclusion that this type of set (Quicksets) may no longer suit E. He is very slim, growing, with very little fat on him.

Insulin needs to go into fat to be absorbed well. But not into the same place over and over, otherwise there’s scarring and lowered absorption. So another can’t win for losing situation, but OH WELL.

The cannula of the set needs to be in a layer of subcutaneous fat, otherwise it may bend. As has happened to us now in two out of the five recent NO DELIVERY messages. It bends when it hits muscle, and no insulin can come out. It also hurts a lot more. It also may not absorb properly, and back up in the tube…and prompt the pump to send a NO DELIVERY message.

Sigh.

So Medtronic have special delivered new sets to try, that go in at 45 degrees and therefore are much more likely to go into a thin layer of fat rather than into muscle (Quicksets go in at 90 degrees, straight through the skin).

We wanted to wait to the weekend to see how the new sets went. E doesn’t like the idea of them. They are new. It’s a whole new thing. And it’s at 45 degrees. He has bad memories of having to inject at 45 degrees because the bruising on his legs was so bad from going into muscle over and over. He had to hold the injection pen at an angle, and it made him feel sick, unstable, to do so — rather than just jabbing it in to the hilt, straight off.

How we understand all this. But it must be done. He has had several days of fighting VERY high numbers, which is incredibly bad for him. Last night we discovered 15mmols before bed. Changed the pump to the old, working set (again: always leave the old set in! We have done this over and over in the last few days, always leaving in one we know works), and corrected, but then got up twice more to correct, and set the temp basal to 120%…all night. He had been missing a lot of insulin, had become insulin resistant, and it was a haul. 

He remembers nothing of all this, fortunately! We however are pretty pooped. 

So he’s at school on the old set, which is overdue to come out. Because we can’t even trust the suitability of the current sets to risk putting another one in this morning. Chances are greater than 50% that he would have been home within the hour with another NO DELIVERY sign. Even though we are back to using the old, more fatty sites. They are just not right for him now.

So tonight we will try the new sets. No choice! If they don’t work easily, we will whip off to the first clinic appointment we can book. Can’t go on like this. Feels unsafe.

Fingers crossed!

***

p.s. the sun is still shining!

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.