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So, you know, all is going well and then all of a sudden two nights ago before sleep E is 16mmols. 16 mmols! Over twice as high as he wants to be.

What the heck? We check his insulin history, and we haven’t forgotten to give him some for dinner. Damn.

We are up three times that night battling him down. Giving more insulin twice, and socking a high temp basal on… By morning he’s in better shape though still too high, 10mmols. Something was pushing his levels up such that they did not want to be brought down quickly.

Honestly. Why? We don’t know. This is the thing. We actually don’t know.

Two possibilities: he has a cold. But it had already come out, and his sugars had been fine. Probably not that.

The other possibility relates to what happened yesterday: one hour after eating a Penguin biscuit and bolusing for it, he’s again 16mmols. WHAT?!

The night we chased him down, he’d also had a Penguin, some time after dinner.

All we can think is that somehow the Penguin is a bit nasty for his blood sugar, even if he doses properly for it. He does love them and often has them with lunch. We’ve never noticed this happening before, but both recent situations are unusual: one was during a dual wave for pasta, so the Penguin would have entered his blood stream in near isolation, not tempered by other food. (It’s also always possible that the pasta dose was not quite right. It’s one of the doses we do mostly by eye.) Last evening, the Penguin was in complete isolation, and we tested an hour after because it was time to eat dinner. Otherwise we never would have discovered the huge spike, because he doesn’t normally test until at least two hours after he eats.

In any case now one of his favourite things is off the menu. Just a chocolate biscuit. But it’s a high price to pay for a snack. He was very upset at having such a spike, so has decided not to have them. It’s the down side of wanting good numbers: guilt and distress at ‘bad’ numbers.

I shake my fist heavenward. Why must everything be fraught with implications and consequences, every single damn choice?! Argh.

It’s felt a very full few days. Sometimes in families there is a time when it seems things are changing quickly. The children outstrip themselves. The adults make plans. Some kind of change is in the air.

We had another clinic appointment yesterday, and despite the week of highs after our holiday, E’s HbA1c is again very good, the lowest yet, well under 7%. Just how lucky we are in this achievement was brought home to us when we both heard another teen’s HbA1c, same day, same clinic: 12%.

Living with diabetes requires an incredible vigilance, and, as the consultant pointed out yesterday, gaining control requires a kind of obsessive nature, a perfectionist bent. How true for E.

Growing with diabetes, growing up with it, requires quite a different set of coping mechanisms. And some are winners in it, and some have Herculean sized struggles with it. This is the hormone story: insulin (a hormone), brings blood sugar down. Cortisol and adrenaline — both typically sky high in adolescents, and especially in driven adolescents (check) — raise blood sugar. Unpredictably. Of course.

Growth hormone, as I’ve mentioned before, also raises blood sugar. And is only secreted at night. What I did not know is that it is secreted at all different times of night, in response to the body using up the glucose present in the blood. As the blood sugar drops, growth hormone has the chance to kick in. So it is secreted in a pulsating type pattern. Unpredictably. Which is why over the last six months we have had these astonishing runs of highs in the night, and then just when we want to do something about it, boom, they stop. We have been completely unable to predict or grab them.

The consultant’s advice for these adolescent highs was very good: correct the random highs (perhaps caused by cortisol and adrenaline) as you find them. Don’t worry overly about the growth hormone highs in the middle of the night, because some of the effect may well settle and drift off by morning. So try to get the morning reading okay, but stress less about the night time one.

He also confirmed that E had grown over an inch since June, and another inch in the preceding three months. So we all had a bit of a celebration and a sigh: we are in the middle of his main growth spurt, which may  last another year. Hold on for the ride.

It is clear that E and we seem to have the mentality to constantly ‘be after’ diabetes and control without it wrecking our lives. He tests as a matter of course, without protest, and is keen to keep in range if at all possible. His most upset times come when he runs high — not just because he feels bad, but because he is hugely, hugely aware of how bad this is for him.

In that way and so many others, we are lucky. We are able to carry all this, to hold it, without it taking an incapacitating toll on us.

But how easy it is to imagine a family, many families, where people just aren’t put together like us. Their lives are not as settled, not as happy in other ways. They’ve not had the support of a good diabetes team in the early years. The child or teen just wants to pretend it’s not happening. And the numbers spiral up, kept just within the need the hospitalisation.

I’m not saying anything that almost all of you know, and may even be experiencing. It does make me desperate though, desperate for help with this: how can all families be expected to essentially cope on their own? How can every person be expected to understand and be motivated to look after themselves? They can’t and UNDERSTANDABLY SO. It’s dire. But the price is so high.

E was speechless when he realised that the teen across from him had an HbA1c which was almost twice as high as his. I could see a helplessness mounting in him. How does this happen? We both felt chastened, and left feeling quite humbled. And for me, a little heartbroken too.

***

A little kitten vid. Cleo calling and playing with them. After a while she realises one is still in the box. Hmm… goes to check it out, and they all (eventually) follow… Our bundles of good and silly stuff amongst all the sobering thoughts…

As is the way with life, business as usual has now taken hold: school and stationery preparations have occupied some considerable time, as has the trying on of shoes and uniform etc… The good news is that for daughter M’s final year at her school we won’t have to buy any more uniform! Yay. Everything more or less fits. Never mind that everything was a little baggy to begin with, and that her skirt — bought three inches above her ankle — now rides slightly above her knee. Never mind that the SAME P.E. kit has lasted E and M both in this school — that’s eight years, altogether. Good quality stuff, eh? Though by now quite, ahem, faded. And it was second hand when I got it! The truth is out.

The bad news is that E does not fit in one single item of his school clothes. In six weeks he has outgrown his shirts, his jumper, his blazer, his trousers and his shoes. Granted, he was looking a little ‘wristy’ as we say, in his shirts and blazer by the end of the school year in July, but now they are unwearable. Sigh. AND he only has two more years in his blazer before going into the top of the school where they all wear ‘home clothes’. Sigh again. And blazers are eye-wateringly expensive. Second hand shop, here we come!

Life with the kittens has settled into a very sweet pattern: Cleo scratches to get out between 6-7 am, eats and drinks, goes outside. Kittens snooze. Cleo returns in an hour expecting some fanfare, which she receives, then goes back upstairs, checks them, eats a bit more in the room, stretches out asking us to tell her how very clever she is and how much she is loved, then climbs in with them. We check on her over the day but although she sometimes climbs out and stretches (and oh yes, eats two more meals), she doesn’t want to leave the room. At about 5.30pm, she fancies a stroll and goes out, eats again, visits with everyone and goes back into her room. Last night for the first time she wanted out at 11pm, so muggins here had to stay awake long enough to let her into the room when she was ready. She also wanted ANOTHER meal, and was interested in traversing the top of the piano, which she miscalculated somewhat and tumbled down, waking the house with her dischord. Oops.

Schubert her brother has stopped being quite so cross with her, which is a relief. He now greets her at least. He has yet to meet the kittens; we’ll wait for 3-4 weeks for that. Meanwhile two out of four babies have opened their eyes completely and one in particular is very pleased with her ability to hold up her wobbly head and look out. The eyes of the other two, the darker ones, are half open. All can do a very endearing hiss when they smell or see something they don’t recognise. Completely soundless and expressionless, they pull back their mouths repeatedly. Then snuggle down with the others, job done. It’s pretty hilarious.

Eight days old!

We think we have two seal point Birmans, one of them the boy, and two chocolate point Birmans, though one of these looks a bit lighter in the ears… could be developmental, or we could have a blue point? Not expected, but hey. (Classic examples of Birman types here. Cleo is a lilac point and the kittens’ father is a seal point…)

***

Re E’s numbers, well. Generally pretty good, but some inexplicable highs. Since I last posted we’ve had two unbroken nights’ sleep: one was fine; another he woke up on 2.7mmols. Right. Then the last two nights at 3am he’s been high again, 13mmols. So we can’t yet find a way to get full nights’ sleep with any consistency. We do look for opportunities, but there have been reasons to get up every single night: he’s running high, he’s running low, he’s at the end of a pasta or rice dual wave, it’s the first night of a changed basal dose, we’ve had three different numbers the last three nights so we can’t risk it! Etc.

People weren’t kidding when they said adolescence plays havoc with blood sugar levels. There are many, many times when it’s just random, random, random.

And today he’s eaten like a horse. He’s always hungry again. For us, this usually corresponds to growth and fighting to control high numbers. Sigh for the third time. (Really, we are okay. It’s just when I look at it baldly I admit we’re tail chasing again…)

It’ll be fine. Some day. Just please lord let his new clothes fit him for a little while.

Almost three days old!

I’m pretty sure that photos of newborns of any species are beautiful pretty much in the eye of the proud grand/parent, but here we are! I snuck in and snapped this first thing this morning, when mama Cleo had popped out to have breakfast and do her usual cruise around the house looking for a singularly inappropriate place to move the babies… Scale-wise, each baby is about 100 grams at the moment, with one slightly larger, at 120g. This one is also the only definite BOY. We *think* we have one boy and three girls. They have increased their weights evenly by about 12% in 24 hours. That’s some growing…

I’ve just stuck my head in. Lots of feeding noises, lots of bickering — I want this spot, no I want this spot! — with mama purring away and resting her head on the backside of one of them. Aww!

She’s very happy. And I’m very happy, because at last this morning she managed to do all of her litter tray ‘business’. Number 1s, as they say, were fine from the start, but I was just getting to the point of trying to investigate mild kitty laxatives, when aha! Done deal. All looked healthy and good. Phew.

My only remaining anxiety (well aside from the larger ‘what is life’ ones and the longer term ‘will all the kittens be okay’ ones) is WHY she won’t drink the water in her room?She has two little bowls, both of which she has drunk out of in other parts of the house, both of which I’ve shown her and dabbed on her nose… But still, she rushes downstairs like a bat out of hell when we let her out to drink from the one on the side of the bath. I mean, I ask you!

I remember what it’s like to breastfeed. You are THIRSTY. Silly girl.

***

And last night I finally had some sleep that wasn’t fraught with worry. I didn’t jerk awake thinking the kittens were squashed, and E’s 3 am number was okay, as was his morning one. Hurray! Perhaps we will not set the alarm tonight? Nah. Too soon. But we may be getting there, for a short time anyway.

Deep cleansing breath.

All well with the new additions: four healthy seeming, good feeding and content looking sort of white kitties. Cleo continues to languish in her box, kneading the air — which is called bicycling, and is a very good sign that she’s lactating and happy. She’s certainly purring a lot!

Last night and twice this morning she asked to come out of the room. She proceeded to eat loads of Schubert’s food, drink from the bathtub as of yore (remember, she has all her own food and water in her room!), and explore the WHOLE house. She keeps checking out her old possible nests, and at one point found a few more: under the sofa, under the bathroom cupboard… Right.

Absolutely NO WAY, is all I have to say to that. We can’t keep those babies safe in another situation. They will set off across the room again. Schubert will think one is a toy. It’ll be awful.

I’m only just beginning to stop feeling faintly ill from constant anxiety. Stay where you are Cleo, in a nice, furry cat basket, lovely and warm and quiet. You really don’t want to move them to the middle of all the action. You really, really don’t.

I’m also getting over my anxiety about her adventures away from her babies. She leaves them while content and wanders about the house, for 20 minutes sometimes. Although as I type she’s been snoozing with them (who can blame her, after what she’s been through) for six hours. But when she wanders, I fight panic. I’m afraid she’s going to forget about them. I know that’s silly.

I’m silly. She now knows what she’s doing. And they are stronger every hour.

I remember a dream I once had about forgetting newborn kittens in a cupboard in our old house. I looked and looked for them, and never found them. When I woke up, I was devastated. I had this dream years ago, around the time I lost a pregnancy.

Strangely, I think it’s that feeling which has partly come back. Combined with the panic of having an actual newborn baby human: like if you forget about them for a minute, they will come to harm.

Not true, of course. Funny how I have to learn that all over again.

***

In the land of type 1 diabetes, we are still struggling with night numbers in particular. Having lowered the basals, things once again went a little high last night. The thing is: we are dealing with a moving target. Diabetes never stands still, not in adolescents, anyway. What may have worked two days ago has no guarantee of working today. At the moment anyway. We can only keep pitching the balls, and hope to at least stay in the ballpark….

And I forgot to say in yesterday’s entry that roughly two hours into Cleo’s labour E came in and said that just to add to the stress he had just figured out he’d forgotten to bolus (take insulin) for lunch. Which was rice, a seven hour dual wave (dripping in of insulin). Which explained why he was 23mmols and feeling grim.

Sigh. No one’s fault. It’s so easy to do in all the fuss. But it took him three hours to come close to back in range, 11mmols. And then of course by 11pm he was too low.

Sigh again. He handled it well and didn’t complain, even though I know for an hour he thought he was going to throw up.

And during that time, two more kittens were born.

1) no kittens yet, though prowling mama won’t settle and then sleeps for hours. I’m off out this morning to get rubber gloves (eek) and antiseptic. Just in case.

2) E’s nighttime numbers have been CRAZY. First we up the basal, then we lower it, then god knows…. Not meeting with much settled success at the moment. Messed up my alarm last night and didn’t wake til 4am. Tested and he was 2mmols. Mega ugh. CHILDREN DO NOT WAKE WHEN HYPO.  All this when having been 7mmols the night before, and 14mmols the night before that. Sigh.

3) we have not had an unbroken night’s sleep since about 20 July. Feeling quite used to it, but if we can’t get on top of this in some form before school starts, we will be dishcloths. I cannot help but feel that being in our late forties has something to do with this…Not built for it anymore. (Sorry, OH!)

4) AND Schubert disappeared for 12 hours yesterday. Scared us silly. Last thing we need is a runaway cat. Would rather trade in the kittens than that! He is now zonked out, not even rising for breakfast…

Over and out… And around and around…

Things were so fraught last week that although I had a lot to say, it all slipped out of my grasp…. We boarded the internet-less boat called ‘Holiday in a Hot Place’, and I left everything dangling.

And here we remain for another week and a bit. Several days in, we are unwinding, reading a book every two days, eating lots of tomatoes and soft cheeses. Not to speak of wine tasting!

E’s numbers are so far so okay, though early on an approaching cold combined with pizza weirdness sent him into a nasty, throwing up hyper (>15 mmols) that took us hours to conquer through 200% temp basals and overriding pump corrections…. The cold itself was hardly anything by comparison. Grrr.

Other than that, all the pool play and walking has meant hours off the pump, 50% temps and still having good numbers for the most part. Mornings tend to be a little high, but this is a holiday pattern: he seems to particularly GROW over breaks! We are also having more slow-digesting food than usual – pasta, rice, lentils – so OH and I are up once again every night testing dual waves – but with life this laid back it’s hardly noticeable.

Which shows how not laid back life normally is, sigh.

I’ll sign off now until after 9th August. A bientot.

— Posting on the move, tiny screen!

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

I know this isn’t what happens. I know it’s all controlled by invisible and unpredictable, minute shifts and changes, electrical messages and whims in the body…

But here’s what happens: cross country running yesterday for E. Traditionally bad news. All day though he manages well, no hypos. Last night before our bed he’s 7.7 mmols. We would normally put him on 95% temp basal (slightly lower the insulin) to account for the exercise. Only the night before, we’d had him on 110% (slightly raised insulin) to combat high numbers — and it had held him mega-stable til morning.

So we reason we will keep him on 100% — which is in effect a reduction from the night before. So should be okay.

We also decide not to test. There is no extra insulin, and only the cross country to be dealing with. And it has been controlled all day. And it has been two weeks since we’ve had an unbroken night.

This morning I wake him on 1.7 mmols.

This is for most an unequivocally dangerous level. For many, this would signal true disorientation and unconsciousness. Fortunately, for E, he seems merely to feel a ‘bit weird’. It’s staggering that he wakes at all, that he knows to drink juice. I am able to have a conversation with him, wanting to keep him awake. This is not the first time he’s been at this sort of level — and each time, he seems to be reasonably okay.

I don’t want to think about what would happen were he on his own. Maybe someone can enlighten me to this.

So this morning, the only way we can see to have prevented this hypo was to get up in the night and test. Ha ha, someone is saying. That’s what you get.

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.