You are currently browsing the category archive for the ‘temp basal’ category.

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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So the reason R was in Japan was to deliver a lecture and to have a piece performed. All of which he enjoyed a great deal, and which went well. Even the simultaneous translation bit, which must have been a remarkable experience…

So he receives a fee. In cash. Which necessitated him doing the most uncharacteristic thing of shopping. In order, you understand, not to end up losing lots to commission converting the currency back.

So he returns yesterday positively laden with gifts: some hand-painted small ceramic somethings — very beautiful, eight of them — a very finely worked inlaid wooden box, pashmina type scarves for M and me — again, so finely made, pure wool, so soft — a couple of small prints, a couple of Shinto good luck charms (‘traffic safety’!), a brilliant duty free watch for E (much needed), and a bit of duty free bling for me. Packets of rice crackers and rice sweets. As you do.

 

Every girl deserves some bling!

 

 

So last night the family was gripped not only by the presents, but also by the origami birds and asymmetrical wrapping lavished upon each gift. The classy ribbons, the display boxes. Even the stickers holding the ribbons in place and the bags closed were things of beauty somehow.

So none of this was particularly expensive. But the care of the presentation, the boxes and bags and tissue paper…is almost breath-taking, an experience in itself and unto itself. When straightening up, I could not bear to throw anything away, even the paper and said stickers. I put them in our ‘bag and wrapping’ drawer in the kitchen.

So how do we — us, the Japanese too — marry using so much paper with wastefulness, with recycling? And if I’m honest, with the almost cleansing aesthetic pleasure that the results, the process, bring?

However we slice it though: it’s so good to have R home.

***

Meanwhile E battles a long-lasting, dragging sore throat which began toward the end of hypo lane last week and is now gradually wearing him down. Probably the same one that kept his sister off school two days the week before. His levels are becoming quite irregular — 4.4 mmols yesterday morning, 17.5 mmols this morning! We are all just reacting — no choice — and he soldiers on. Has a Spanish assessment today. Doesn’t want to miss it.

Sigh. We correct and send him off to school on a 200% basal temp, fingers crossed he doesn’t crash.

And M has brought her stunningly beautiful inlaid box into school. Along with its wrapping paper. And the blue origami bird.

Okay, so I changed the evening ratio and the first night it was a DREAM. 6.1 mmols at bed, 4.8 mmols upon waking. Sigh of satisfied (and slightly smug) relief.

Things trot along fine yesterday, then, huh, too high before dinner, 11 mmols. End of dual wave pasta from lunch. E comments that it’s too high even for the end of a dual wave and that he thinks the changed dinner ratio will just make things worse. He wants to override the pump and give more insulin.

I resist. More than one day testing is our motto, and we just can’t tell how things are going to go.

So he was right (again). At bed he is 16 mmols. ARGH. Correct and test another hour later. 14 mmols. The pump will not correct again… and this morning he’s still too high, 10 mmols. Another argh. We correct, and when he gets up for breakfast, he’s fine, 7.3 mmols.

Then he forgets to take insulin for breakfast (SO easy to do). Which of course we don’t realise until testing for lunch, three hours later. When he discovers he’s 18 mmols. Triple that argh. We correct and put him on 200% (basal/background insulin). He’s massively apologetic, cross at himself. We also make the decision that he’s going to eat with us rather than put his food in the oven where it will become even crispier than it already is (remember, I’m ‘cooking’). This of course means that him coming down will take MUCH longer… more food going in means more for the body to deal with…

He does comfort himself/me though by mentioning that at least he won’t get ketones, because there is a LOAD of insulin running around his body by now…

Nothing like searching for the half full bit of the glass! Bless him.

It is stupidly easy to forget to bolus for a meal or snack. Reason being: when weighing, measuring, calculating become second nature, then it’s just a momentary lapse that results in skipping the final step — and because it’s such force of habit doing all this, you don’t even remember you’ve forgotten, if that makes sense. Until you stumble across it.

So now it’s three hours and three blood tests later and he’s 12 mmols. On the way down.

The next unknown will be dinner and its ratio: what will happen tonight?!

***
R home tomorrow. I confess I’m now getting a bit tired, hazy with what needs doing. Along with all of the usual kid organising, shopping, meals, laundry, my work (what work?!), cats, guinea pigs, homework etc, there is as ever all the diabetes kit to keep track of: managed to order and go pick up strips and lancets four days later…only the manufacturer seems to be having problems with the strips and they are nowhere to be found…Hmmm…So I have to remember (again, and maybe even again if they don’t have them) to phone or go in and track down the strips. (And prepare the ground with E in case the chemist doesn’t get them in: we have a supply of sorts for another sort of meter, but old habits really do die hard.) Also managed to check insulin supplies — today — and find that we only have one vial left. So ordered those too. And ordered glugogel, because although we’ve never used it, I suspect that having some in-date is a good idea! We are lucky to have a really convenient and helpful chemist, right in our grocery store. They keep track of everything and request repeats from our doctor, which saves me a step… But even they did look at me a bit like why are you placing three orders here over several days when if you’d had your mind even half together you would have done it all at once last week?

Oh well.

The good news is that Archie and Schubert are pretty much best buds now. Cleo however still has this odd love/hate thing going with Archie, and will walk right up to him, hiss in his face, bat him, then run away. And he’s just standing there minding his own business! Then he might run after her, and she runs and hisses and makes a huge fuss…but actually seems to be almost playing…? I don’t know. Neuroses clearly infect even our pets in this household!

Here is the delicious Archimedes, in any case…

As ever just when you think it’s safe to go out…. E spent ALL of Wednesday hypo-ing (it’s Saturday today). At least SIX hypos. Dig it. Just could not get back up. As I wrote to a friend, by the time he got home from school he was literally scraping six month old sweets from the bottom of his bag to get some sugar, having finished off the four boxes of juice and whole roll of fruit pastilles which he always carries with him.

Sigh. That first day we thought we’d nailed it: discovered that he’d forgotten to temp basal from his exercise in PE, and also somehow that he’d been on his weekend pattern for the pump — which means he’d been getting more insulin across the board.

Aha! we thought, that explains it — and changed nothing.

Thursday rolled around: four hypos. Hmm….

Many of these hypos have been in the 2 mmols range — very low, in other words. So we took action, changing basals all over the place.

Friday: one very low hypo. Too high in two more places.

Argh.

Then somehow we forgot to put pasta on a dual wave (drip the insulin in) last night. So he took the full whack of insulin for 95 g of carb up front, followed by 29 g for a bowl of ice cream, 20 g for a packet of crisps and 10 g for some chocolate…and by bedtime was low and plummeting when we discovered the mistake. In went the juice and fruit pastilles…. but of course this morning he woke on 14 mmols because the pasta GOES IN LATE, the HYPO TREATMENTS STACK UP more unaccounted for carb, and THERE WAS NO INSULIN to cover ANY of it.

Sigh again.

It’ll be fine. But something’s changing. Temporarily. As always. We’ll just get it right, then have to go back to where we were.

Am I allowed to sigh three times?!

And tomorrow R heads off to Japan for nine days.

Ack.

In the inimitable words of the fabulously plotting penguins in the film Madagascar: just smile and wave boys, smile and wave…

Well, after reaching the summit to Tryfan two days ago, yesterday the boys in Wales apparently bog-walked (ewww! E reports bog water over his boots), taking measurements or some such — and then swam. Which I reckon was sorely needed, after several walks and no running water (ewww!).

Number wise he was okay all day, though a little high, but in the evening things went seriously awry. For whatever reason (too much free carb? too low a temp? the set becoming non-viable? — probably all three), at 6.30pm we got a message that he was 24 mmols (over twice as high as the high end of what we were all aiming for while he was away) and feeling rotten.

It was dark by then, and they have no electricity. E had been trying to change his set (due a new one) on his own, with a torch, ill from being high, and stressed to the max. And wouldn’t you know it, for the first time since changing over to sil sets, his pump read NO DELIVERY.

A number of things then cascaded into wrongness. E was holding up, but only just holding on.

OH talked him through. Minute by minute, several phone calls, clear instructions. Try a new tube. Then a new cartridge. We gritted our teeth as E described all his pump equipment strewn around his bed in half-darkness. Talk about stress!

Tell someone, I texted him, in some desperation. They will be sad to know you are struggling.

He was still 21 mmols, despite a huge correction.

All of us had forgotten that he remained on a low temp from earlier in the day.

At last the new set was in with insulin that looked viable. But E was terribly shaken, still high, and of course would not be able to join the others for dinner (it’s unsafe to eat when that high for obvious reasons: more glucose stacks into the blood).

When E is that high — and I think this is a common reaction — he becomes emotional and muddled. He has to make a supreme effort to exert his considerable strength of mind and intelligence to trying to gain control, to understand sequences. The added stress of being away, in the dark, and on his own, meant that for a short time, it was a losing battle for him.

This end, we were losing our own battles too. OH was preparing himself to drive six hours and go get him. I was wrestling with useless tears. Daughter M, once again, had wisely set herself up for dinner in front of the box.

At last OH convinced E to go to a teacher. Who phoned within minutes. She had taken control quickly. Found things he’d lost. Sat him down to wait. Established how long he’d been high.

We tried to explain how he’d be feeling. We said it should get better. By this point we’d set a high temp, and anticipated him coming down fast. She’d saved some food for him. If he’s not down in a couple of hours, OH began — we’ll drive him to the hospital, the teacher said.

Probably not, OH said. They won’t know what to do either.

And this is true. Don’t even get me started on what medics don’t know. How they will remove pumps. How they will run both glucose and insulin in simultaneously (completely counter-productive). How they might think that 2 mmols is fine (when it’s mega-hypo), or that 6 mmols is too low (when it’s within range). Or that, so long as the person is feeling okay, 18 mmols is not bad (three times as high as you want). I’m sorry all you medics out there, but these are true stories. The training for hospital diabetes treatment must be seriously deficient, and is entirely crisis-oriented. By hook or by crook, diabetics survive hospital intervention. But so often it is ridiculously and even near-dangerously cack-handed.

Anyway. E had some carb free food: cheese, ham, cucumber, and immediately began to feel better. In 20 minutes his level was 17 mmols. He ate. In another hour, he was way down to 9 mmols. By this point the high temp was off. He had to have some free carb or he would crash. In another hour he was, yes, low at 3.8 mmols. Some juice, and more free carb.

Like a yo-yo. Poor lad. He set a 70% temp to reflect the exercise of the day, and we all agreed he could make it without night testing. Crisis over.

Only guess where they are headed today: SNOWDON. The highest mountain in Wales.

He must be shattered. Up until nearly 1 am. A walk lasting many hours in front of him.

We’ve barely heard from him this morning — a rush getting out, apparently. I’m fearful that last night will hang over him, tempt him into insecurity, into double-guessing his judgement. He’s SO good at all this. He’s great. We keep telling him.

A little prayer then: let last night go. Start the new day. Trust your instincts. Know that you are strong, and can do anything.

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.

I’ve had the odd sense in the last few days that I really shouldn’t do a post about the kittens. There are lots of other things to talk about, and some of the reason I’m here is to talk about them: our experiences with type 1, the way that diabetes is seen and talked about (or not), and our family functioning alongside all of this….

So I’ve decided to DO BOTH. In time-honoured multi-tasking fashion.

First, for days I’ve been haunted by Justin Webb’s article in The Daily Telegraph online. OH sent this to me, and I happened to read it on my way into work, stuck in the car park. I should have known better, because it completely undid me for a few minutes. Once again, the relief of reading about how someone feels, how they understand, how they get it, can be overwhelming. And to have my feelings encapsulated, for just a few moments… Still overwhelms me, and probably always will.

Second, everyone is back at school and so far so pretty good. Daughter M has swung into her last year at this school with real vigour, to the point of having a school play audition from 5-6pm tonight. So watch this space. E’s numbers have been pretty respectable as well, with too many hypos however and a couple of odd highs. The change in routine means a fairly wholesale overhaul of his doses and ratios, so we’ve been chipping through that the last few days, with decent success. Fortunately his night time levels seem to have stabilised, and we had three — count them three! — nights of unbroken sleep.

That saying, he did wake on 2.7mmols one morning. We know the reason and it is this: he fell asleep without testing. We came in and tested him before we went to bed: 3.3mmols. Semi-woke him under great protest, forced in most of a carton of apple juice, and put him on a very low temp for an hour. This was still not enough, clearly, thus the 2.7mmols at 7am.

Lesson: he mustn’t go to sleep without testing. End of story. If he had tested, he would have seen he was too low (eg 5mmols or so) for the night, and had a biscuit, which would have done a far better job of holding him steady in the night.

(Heartache: that he has to do this at all. That this ‘life lesson’ is literally one about life. He forgets it, of course, at his peril. Which is, how shall we say, a stupendous drag.)

Sigh. We continue to live and learn. And learn, and learn and learn.

***

And all along, like our own secret supply of the sweetest music imaginable, are the kittens:

2 weeks old!

Archimedes, Eudora, Artemis and Little Miss Unnamed Yet at the back

Archimedes, Miss Unnamed, Eudora, and Artemis apparently playing dead

Archie standing, Eudora swatting Artemis, Miss Unnamed maybe cleaning?

As you can see from the captions, we are beginning to name them: Archimedes (or Archie) is the larger darker boy. He always looks a bit disheveled and bumbling, because he has long, plush fur, and also M says, because his eyebrows are tufty! Eudora is the lightest, a girl, and she is extremely alert: the first eyes open, the first out of the box. She also now comes toward our voices, which is heart-melting. Artemis is the darker girl (we think). Called thus because of the gender confusion, and because two members of the family are very into mythology (Artemis is often used as a boy’s name now, but is actually a goddess from Greek mythology, a huntress and goddess of wild animals and childbirth). Artemis looks like a delicate one, very fine face. She is third in development and shy, but now beginning to show herself. Miss Unnamed is really only slightly so: we are stuck between Pandora and Eurydice, the former because it’s like Eudora and they are both light, and the latter because she is a bit of a ‘follower’, more reserved — was the last to venture out of the box, and is frequently sleeping while the others are playing. Negatives about Pandora is that she let all sorts of evil out of a box! And that seems unfair to put upon a kitten (though M points out that Pandora also released hope, which was mega good…). Negatives about Eurydice is that a) it’s hard to say and b) it’s hard to spell! And what could it be shortened to in which case? Eury?

Anyway, as you can imagine they are the light of our day and HUGE time-wasters. Cleo is still confined with them, so I’m still doing lots of letting her in and out of the room. Cleo is also eating for Britain, so our cat food bills are tremendous. I allowed Schubert in the room with us today for the first time. Cleo was very relaxed, stretched out. He came in, she watched closely. He sniffed out the room, stuck his head in the box. By this time Cleo was on her feet. He and Cleo sniffed noses, and he left the room.

A good start!

For you real die-hards, I’ve put a 9 minute video up on YouTube. It’s a film of Eudora and then Archie venturing out of the box. Eudora had already been out once, and this shows in her far-wandering propensity. Archie is a brief explorer. Cleo was there and can’t figure out what to do with her wayward daughter….

If you do watch, I apologise for the 2 or 3 minutes of  filming into space… I just forgot what I was doing, alas. Also, mid-way through you can hear E (muffled like the adults talk in the old Charlie Brown and Snoopy films) outside the door. What he’s doing is telling me that he’s home from school and tested his blood. And that it was 15mmols and he doesn’t know why because he’s checked and he did dose for lunch. But that’s he’s corrected with more insulin and won’t have a snack until his level goes down — even though he’s starving. Argh. And heart-tugging.

Anyway, be patient. There’s some nice footage at the end. Such a good mummy!

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.