You are currently browsing the category archive for the ‘insulin pump’ category.

The absolutely LAST thing I have time for tonight is a post…but I feel determined not to let work get on top of me yet again. Especially after meeting Clare H (hello Clare!), a regular reader, in the gym yesterday. I’m thinking: do a post, do a post… And all the best for her daughter C’s move this week to a pump!

ANYWAY. All well here. Some weirdo numbers. Mostly too high. But not thousands. Just a few irritating ones. Pizza dual wave needs changing. Breaded chicken continues to be problematic. And spag bolognese is a pain in the bottom: the normal pasta dual wave is consistently a disaster with this; evidently the fat in the meat slowing things down. So E crashes. Treats hypo. Then hours later goes high.

Argh.

ANYWAY. Another fun one is that using the pump is SO automatic that last night it backfired the opposite way from usual: instead of forgetting to bolus for a meal, E accidentally bolused when he meant to have some free carb (eg without taking insulin to cover the carb content)! Ack. He hadn’t eaten all his meal, so needed to have some free carb to soak up the leftover insulin… Had a cereal bar, and automatically bolused for it. I realised too late, with a kind of weird retrospect, suddenly recalling the buzz from the pump of the dose delivering… an hour after. So in goes TWO boxes of juice (because the extra insulin in the meal still hadn’t been accounted for), and we’re in bed over an hour later than we wanted to be in order to see through this errant dose…

Sigh.

AND — as if life weren’t complicated enough (as ever), Cleo is beginning to pound the floorboards. Which can only mean one thing: the vet was wrong, and the breeder was right — she’s coming into season way before spring.

And Archie is obviously an adolescent. And you know they only want one thing…

Ack.

We’re thinking we’ll put her on the pill for a year or so — what do you think? A bit like when you have babies, it’s hard to stop having kittens…

With that: back to the coal face for me…

 

Advertisements

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…

Okay so R is now in Japan. Has been there for 5 days, back in four. Having a fab time, taking lots of pictures, and really reveling in the extreme aesthetic differences. Would love to be there with him…! We skype in the odd in-between times, the miraculous hour when it’s not the middle of the night for him or us… This generally falls in the afternoon. In fact one day I shot home from work for half an hour just to see how visiting Kyoto went! So the children have only spoken to him once in all this time. For a family that talks — alot — this has been decidedly odd. And I imagine E especially misses his presence: it’s hard to overstate how much young men need their dads. And in E’s case, he depends on his dad’s objectivity, his clear-thinking, his rock-solid reassurance (the only one E really believes, I know this) around anything to do with diabetes. So it’s probably doubly stressful.

Though everyone’s generally holding up well.

Except for the uh… hour long hypos.

So this exact thing has happened two nights running: a short dual wave (dripping insulin in) for pizza in one instance, fries/chips in the other. (Here I reveal my almost complete lack of cooking skills: we are all struggling with fairly naff food, being used to the dreamboat and exceedingly healthy, home-cooked stuff of R… Ack.) ANYWAY (again), short dual waves. Which usually cause no problem. So an hour after each ends, there’s a plummeting hypo. A very bad one. Taking not one, or two, or three, but FOUR treatments over the hour to sort. E’s fairly swimming in apple juice, and ill from jellied sweets. The adrenalin has kicked in, and he’s panicky, upset, cross…

And who can blame him. Really, really, really a DRAG.

Then, having sorted the long hypo from the night before, yesterday morning I walked into his room and smelled it for the first time: pear drops. Sweets. I sniffed his bin. No, wasn’t that. I sniffed his covers. No, wasn’t that. I realised with a sinking, guilty heart that it was him, his breath. And that this meant he had possibly dangerous ketones. That he would be sky-high, and had been for hours.

Choice words, and crashing guilt. He was high indeed: 17 mmols.

In the event, the high cleared quickly. I signed him off PE (unsafe at 14 mmols plus), and by lunch he was in range. We communicated throughout by text.

Last night the same thing happened. Not just a funny turn then. Something going actually wrong. Four hypo treatments in the space of an hour. I got up in the night (because of the night before) and boy I was glad I did…Once again, he was 17 mmols. I corrected, and by morning he was still too high, but in a more sensible range, 11 mmols.

This is my theory, and R concurs (skype this afternoon!): first, his dinner ‘ratio’ (eg how much insulin needs to be given for each 10g of carbohydrate) needs tweaking. On the pump, ratios are set for different times of day and different meals, depending on insulin sensitivity. For us, traditionally dinner has needed the least amount of insulin (I think this is common?), and it is also the one meal that we change the ratios for quite frequently.

Second, the treatment of the hypos is inefficient. He almost always treats hypos with juice in the first place. Juice is very efficient, enters the bloodstream quickly. He doesn’t like, however, to drink LOADS of juice. So he chose to alternate the juice treatment with fruit pastilles.

The problem was, he was ‘dropping’. This meant that the peak of the insulin was not yet reached when he went hypo (this peak is around 2.5 hours after a dose, or in the case of dual waves, about 1.5 hours after it ends). So it was not a question of ‘recovering’ from a low, it was a question of keeping from going lower… Which didn’t work, both times. Both times he dropped like a stone.

I think I’m pretty clear that fruit pastilles simply aren’t quick enough in for that situation… They don’t work, so you treat again, it sort of works, but you must treat again…My thought is that they kick in well after they need to, stack up, and… result in a scorching high later on.

So. In that situation, no more pastilles. Just juice, just direct sugar. I feel sure that the lows could have been controlled sooner if only we’d stuck with juice instead of alternating with pastilles.

And we’ve changed the dinner ratio. And no dual wave tonight. So we’ll see what happens.

Sigh.

***

It may not surprise you to know that today, instead of marking or doing any number of other domestic and work-related things, I’ve just had a little breather: I met my dear friend Nancy for breakfast, and then later made a spontaneous appointment for the second manicure of my life. My fingernails are now a glorious deep teal blue. E says he’s ‘never really got why girls paint their fingernails’ — and I can sort of relate. I don’t really get it either.

But it is quite unadulterated fun. When I picked M up from school, she saw my nails and said, under her breath so as not to draw attention to them/her/me: how cool are they? how cool are THEY?

Here is a girl who relaxes by lying in a bubble bath, a bowl of chocolate on the side and an audio book playing. She’s as chaotic and non-girly and wacky-arty (seriously more so) than I am. But she gets it, which must be some kind of parenting triumph!

Looks black but is really deep blue/green...My eyes have barely a wrinkle -- but my hands look my age!

Hello everyone. And hello again. So many hellos indeed that it’s hard to know how I will start this post… Apologies? Reassurances? Thank you firstly to those who sent messages via email or facebook about whether we were okay.

Yes, we are really fine. Truly fine. I just had to let things slide in the middle of what was the busiest teaching and admin term for me in several years. It became a case of only the absolutely essential bits of life survive! And the blog just went — poof! — like dust. Before I knew it so much time had passed. It is only with the New Year now upon us that I can sit back a little and think now I can get back to this. Thank goodness.

Because I’ve missed it. Lots.

***

Catching up info: E is now at least three inches taller than me! Yes, choke in surprise. It has happened so fast that I keep thinking he’s either wearing heels (not likely!) or standing on his toes (also not likely since he gave up dance about a billion years ago). He is now creeping toward his father’s height of 6 foot, which his father categorically refuses to acknowledge. M too has shot up: fits my shoes and also wears the smallest women’s size 6 (uk, that is. American it’s 2 I think?).

What the heck?

But it’s the sheer food consumption that is doing our heads in. Forget monitoring carb intake. Just forget it. The best we can do is try to get him not to eat too late in the night, so that we don’t have to get up and test. He’ll sit down and have 400 g of mashed potato, eight small sausages, and a pile of vegetables. Faster than any of us can finish our meals, he’s done and standing up for ‘more food’. He returns to the table with a cereal bar, a pot of yoghurt, more sausages… Our food bill has gone up by 50% in the last six months. SO alarming. He eats all the time. We go through boxes of cereal bars, probably one per day. He also doesn’t seem to want non-carb, like meat and cheese. He really, really wants carb, big time. His body must just be building itself, putting together the infrastructure, like constructing a building… It’s incredible to watch.

I realise I’m not telling you anything many of you won’t know. But I am really reveling in it: his growth means his diabetes is controlled. Which is a source of intense relief.

And controlled it is. The last HbA1c was again very good. This is not to say that we don’t have days of weird swings and runs of highs and lows — but we are blessed with a young man who is admirably keen to stay in some control. He never does not act on the information his testing kit gives him, and he never (unless out with friends in town) doesn’t test. This is hugely to his credit, and how very lucky we feel in this.

Case in point: yesterday he was inexplicably 16mmols before lunch. It scarcely matters how that happened, and although it was less than two hours since he’d eaten his snack, he still felt the number was too high. So he overrode the pump and gave himself a partial correction. By PE two hours later he was down to 6mmols — he didn’t eat to bolster up for exercise because he was worried about having been high (is this a run of highs? for instance), but within an hour he’d hypo-ed and had to stop. He treated, and by the time he was home he was a nice even 7mmols.

I told his father the story. He’s a good lad, he said. Indeed. Much better to have tried to get things lower than leave a high and allow himself to get insulin resistant. We know by now that if we don’t act quite harshly, he can stay high for hours sometimes, depending on why it’s happened. In this case, it was inexplicable. He rightly thought the mostly likely reason was not because of a previous bolus, but because of feeling slightly ill, or from a cortisol high. It was unusually high even for the middle of a bolus.

As it turns out he probably didn’t need to do this, as evidenced by his quick fall in blood sugar. But better to do what he did. 

***

Enough extolling! Suffice it to say that we press on. Funny night highs continue, and we just tweak the pump when we think the high might have set in…whereupon it goes away and of course he’s too low. Sigh. We’ve had a good enough few weeks at the moment such that we are hardly ever getting up to test. Thank goodness, because we have been on the floor with exhaustion, both of us. E understands this, and is careful not to eat late if he can help it. We also almost always aim to have any pasta or rice earlier in the evening — before 7.30 pm — so that we can test him right at the end of the dual wave, at 12.30am. I confess that staying up even that late is fairly dire. And once last week OH spilled hot tea over himself in bed after falling asleep waiting for the right time to test… But it’s better than a 3am alarm, for sure.

***

While I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or ’caused’ their own or their children’s diabetes?

Medicine knows quite a lot about genetic predisposition and about viral triggering… I can trace I think E’s trigger through to a stomach bug he had in Italy in 2008. Everyone else had it too, though we only had cramps. He had cramps AND a fever, was really quite poorly. Three months later he was diagnosed.

What are others’ theories, and experiences? As Angela points out, it can feel so random, especially, as in her case and many others’, there is more than one child in a family affected?

And of course it can feel unfair. Does feel unfair. Is unfair. And arbitrary. And stupid, stupid, bad luck.

So there.

Any thoughts welcome.

For now: great to be back.

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.

Just a word here to say that living with Type 1 and getting out into the world and doing challenging things requires it. Lots of it: grit.

E and we have been in good text contact over the last two days. Lots of ups and downs. The cottage is disorganised and dirty. He wants his space and a sense of structure and control (a bit control freakish, like lots of well controlled diabetics, one suspects!). Can’t have that. A bit of a struggle.

I forgot to pack the scales. Don’t even go there.

So lots of estimating. A little added stress.

So far he’s had two mornings of heavy walking accompanied by almost constant dragging the bottom — floating around 4 mmols, with occasional hypos — for hours. He’s on 0% temp, eg no background insulin, and eating loads of food without insulin: cakes, cereal bars, sweets, juice, chocolate, sandwiches…

Then last night he had to negotiate raising the temp a bit to account for higher numbers in the afternoon — 12 mmols for too long to leave. 

Managed everything perfectly though: 60% temp all night, waking on 7 mmols.

Wow.

So today he undercarbs breakfast in an attempt to start his walk higher, and spikes way high (20 mmols). Under corrects but anyway dips low again all morning. He tells us they are taking a mountain guide and going out to climb a mountain with a rope. I send back a whoo whoo enjoy it kind of message, but feel myself  battling the urge to check my phone all the way through class…

Discover that this is what he’s climbing. I can barely bring myself to look!

And then this: constantly around 4 (he writes) and having tons of carb. But having the time of me life at the moment.

Bursting with pride. I’m at work, loads to do. But I’m about to walk upstairs and find someone just to say this to: anything is possible.

A calm – temporary? false? who knows — has descended upon the house today. Cleo came out this morning and for the first time did not prowl every inch looking for alternative baby nests. She behaved like herself, sitting in her favourite places, generally doing her Cleo thing. For an hour. Meanwhile babies slept whitely and silently, now looking nearly fluffy (!) upstairs. Bless.

She’s been up there ever since, for six hours. OH just went to check on the family, and came out saying it must be the endorphins. She’s lying there looking like her whole flipping life finally makes sense, pedaling her paws and purring…

And we all went to bed earlier last night. More sleep. Finally I had a decent night. E’s number not good – 12 mmols — at 2am, and this after forcing more insulin (eg doing more than the pump wanted us to do) when he was mid-way through a 5 hour dual wave for pasta (about 10 mmols tops expected in the middle of dealing with pasta – he was 15 mmols, so we forced 1 unit of insulin in the hopes of getting him to 10 mmols. No such luck.).

So either he’s decided to do a little growing again (randomly, for who knows how long) or the pasta went in weirdly, or or or or or… Meh. Who knows anything.

But we’re feeling quiet about it. We’ll try again tonight. Peace and love man.

Upon arriving home, we knew for sure that Cleo was expecting. She is round. Eating like a horse. And there are kittens in there! Moving around like crazy.

She is due sometime after 21 August (three days). We are in a bit of a lather.

First time grandmother, I have taken to it with typical obsession. She has not one, but three firm ‘nest’ alternatives now. Which have been alternately lined with towels, fleece and now finally newspaper in the last week. She has not so far chosen any of them. I pray her eventual stopping place will not be a) under a double bed or b) on a window sill, which to be honest has been her favoured place these last ten days. A windowsill! Imagine this. Or not.

Establishing nests for her also seems to have led me into my own nest building: I have been (again rather obsessively) clearing out cupboards and wardrobes. It’s a case of serious overdrive. You could be forgiven for thinking we were getting ready to either move or adopt a child. We have so far filled about ten black bags with STUFF. Only two more sets of clothes and two more chests of drawers to go, and then we will have been through all storage items in the house. Preparing for babies, moi?!

OH says that daughter M would do best to be at some distance when she falls pregnant (one hopes, years from now!). I think he may be right. Meanwhile, I am trying to catch languishing Cleo long enough to trim around her teats (yes, she says defensively, this is actually done, we are informed by the breeder!) so that the kittens (kittens! kittens!) can find their milk…

Sigh.

Cleo looking altogether more relaxed than I feel!

***

On other fronts, we did have an absolutely wonderful time: we read and swam, read and swam. But also saw a number of deep South of France cities we hadn’t before: Avignon, Orange, Arles. Of these, Arles was stupendous. The kind of working, ancient town — with a few Roman remains thrown in — that you’d just like to get inside of. This is what I love about imbedded history: yes, there are tickets to buy and audio books to listen to. Yes there are tourists. Of a sort. But the life of the city just carries on around it. People drive around the Roman amphitheatre, walk through it on the way to work. It’s incredible. And heartening. We also went back to Uzes and the Pont du Gard, two favourite spots which lived up to our memories of them. Stunning, Provencal, and somehow liberating.

ANYWAY.

Number wise things were just fabulous: after the first couple of days of temp basals, E’s insulin levels seemed to settle rather miraculously. We began not to put him on any temps, he hardly had any lows, played in the pool a great deal, walked a great deal… And, you guessed it, GREW like a beanpole. By the end of the holiday we realised his needs had gone up overall, which is why all the exercise etc had not sent him crashing over and over.

And you guessed it: on the way back in the car, his numbers began to soar. Where they stayed, enduring the battle of the 200% temp plus corrections, for about 4 days. Like a plant, with a little sun and water, he had shot up. Had he been less active, we would have had to increase his insulin by about 30%. As it was, we had to do it when we got back.

We figure he grew about an inch in that two weeks. No kidding. He came downstairs the morning after our return saying his eyes were at a different level in the mirror! My lord!

No wonder we have been running to keep up.

So OH and I have not had an unbroken night in four weeks now. We are still trying to get night basals right — he keeps being 12-14 mmols at 2 or 3 am, which is sort of incredible. We then correct him and he’s usually (but not always) okay in the morning. Clearly he’s doing all his growing at night! This morning he was 2.9mmols however, too low, so it’s just that middle of the night window that needs looking at again. We’ve already raised it by two increments since our return.

Oh well. We will get there. Until something else changes.

We’ve also had to change his insulin sensitivity on the pump, or his correction ratio (eg how many mmols can one unit of insulin be expected to lower him?). It used to be 1 unit insulin to 4 mmols in the daytime (high, but he’s quite sensitive), and 1 unit to 5 mmols in the nighttime. For the first four days back at home, we kept finding corrections less effective, lowering him only a little. After setting the basals on 110-120% temp all day and night, and still corrections were not doing it, we figured it wasn’t just a question of basal adjustment. We therefore changed his correction ratio to 1:3mmols for the day, and 1:4mmols for the night. The nighttime one still seems hit and miss (eg didn’t bring him down from bedtime to 2am, and brought him down too much this morning) — but we’ll have to tackle this again through basal rates, as I say…

Endless.

But he’s  three inches taller than me now. Since Christmas. He looks like a tall person in a queue of people. He is beginning to measure up to his father. Which is some good growing, type 1 diabetes aside. Yay!

***

And I haven’t even mentioned daughter M. Who grew like a plant as well, and was the only one in the family who turned the colour of a nut effortlessly and has French style, with scarves and tank tops and gladiator sandals and sunglasses, like nothing I’ve ever seen. Who is only now four inches shorter than me. Who will pass me in height in oh, two years or less. And I will be the short, comparatively squat one in the family. It’s alarming. Really wild. I always thought I was tall. 5’7″ is pretty tall for a woman. Isn’t it? Isn’t it?!

But I’m surrounded by lean, soaring, willowy folks. Of whom I’m so proud. Sniff.

Cleo, E and M. Must be something in the water.

If you haven’t explored the Urban Dictionary, you might want to think about doing so. I say might, because if you do, you also have to be prepared to run across some shall we say colourful definitions. All the words are input and defined over time by readers….so some of them are decidedly wacky, and many of them are not fit for under 16s.

However. Having a 14 year old in the house does mean that these totally unheard of words enter common usage. Hench is one of them, and one of my favourites. For anyone who doesn’t click through to the dictionary, it means large, muscular, fit. As is the way with slang words, it’s also used with this kind of smart boy self consciousness. And it really does make me laugh. As in:

1) from OH: I’m going to go to the gym now, and get hench.

2) from E, while watching the World Cup, about the players in turn: hey Mum, is he hench? Well is he hench? How about him then?

3) from M, about our large fluffy white cat Schubert: he’s not chunky, he’s hench.

4) from E again, two nights ago, on the verge of inserting his first CGM sensor: this is one hench needle.

******

Yes, we have finally but finally ventured into CGM land. And the jury’s out so far. The sensor insertion is, I have to be honest, pretty grim. The needle is VERY hench, and scary for a slim boy with virtually nothing extra on him to fire it into. He really had to screw his courage to the sticking point. Did not want us to do it. And it was quietly a little heart-breaking to witness. Like the sil-sets, the needle goes in at 45 degrees, and like the sil-sets, the insertor sounds like a small firework being set off. Disconcerting if you’re not prepared for it. But by far the hardest thing really is the clunkiness of it all. It’s big on his stomach, with sticky tape over it, and that combined with a pump set… well, we will need to see how this goes. At the moment, it’s feeling invasive, and a little brutal, somehow. Perhaps this will pass.

We long for it to pay off, for his quality of life to be improved. It’s all worth it then, and he’ll learn to do it, exploit it, and live with it.

At the moment though, the readings are still up to 2mmols off and the hypos had in the first 24 hours weren’t picked up in the readings.

I suspect there is considerable skill to this, learning when to calibrate the machine for maximum benefit and accuracy, when not to.

For now, the best we can hope for is that in the next day or two he may be able to have a snack without testing. Or we may be able to get up in the night and look at the graph rather than wake him and poke his finger. This would start to feel like a promising path.

In another five days, there’s the prospect of the next hench needle to contend with. He doesn’t have much room on his stomach for the CGM and the pump, certainly not enough to guarantee good rotation of sites. So he’ll have to circulate the CGM elsewhere, to his leg perhaps. Which will be another leap of faith for him, and more courage. He has terrible memories of painful injecting on his legs.

Sigh. Every change and improvement in control and quality of life is preceded by a period of insecurity and SUCH hard work. And stamina, and courage. And belief. We’re in this together, but it ain’t half hard sometimes. I don’t want this for him. We don’t want this for him. Sometimes it feels like we would trade ANYTHING for him not to have to deal with this, day in and day out, morning noon and night… And when it’s like this, useless anger comes in waves: why, why why?

Sigh again. Just because.

Things continue to be hither and thither — hence my struggle to post! Apologies. What always then happens of course is an overwhelming urge to say EVERYTHING.

Not possible. So a quick run through: we think Cleo the cat is with kitten! Her brother is able to tolerate her, phew. We had a party for 30 people last week, and the sun managed to shine throughout! Phew. I’ve taught some year 6 (11 yr old) and today year 5 (10 yr old) school children poetry these last few days too. Really excellent fun. Phew! I delivered a paper to the Poetry and Voice conference at University of Chichester over the weekend. On how different sorts of writing have served different purposes since my son’s diagnosis — and on how the beach hut poems came about. Went well I think, and the whole conference was a stimulating one. Phew!

Not so phew: daughter M, six weeks after cracking her cocyxx in a rounders match (seriously painful, missed two days of school), then jammed her ring finger on her, yes, fingering hand…. So has had to re-schedule her violin exam. Oh dear. Very painful, swollen joint. Little delicate hands. Sniff!

Not so phew too: battles with lows. The heat seems to have had the generalised effect of lowering E’s insulin needs, so last week we had several evenings of unfortunately several hours of dragging around in the 3’s and 4’s… Even with the pump on 0%, eg actually off. It was extraordinarily wearing for him, and a I don’t mind admitting that one night it was a little scary: no insulin going in, already treated two hypos, and gee, 15 minutes later he’s still on 2.5mmols... Disconcerting. But we got up I think half a dozen times that night, and by morning he was okay.

Sigh. Then after 3 nights of going high from too low a temp basal (too little insulin) in the day — we think we’ve sort of cracked it. For now! 90% temp basal in the day, plus 90% of the usual carb counting/ratios. Turn off temp in early evening to stabilise for the night. Unless he’s exercised of course…! In which case turn it to 95%.

Assuming he remembers that he’s exercised.

Assuming that we remember what he’s told us. And that we all don’t crash out on the sofa from SHEER EXHAUSTION while watching the World Cup, where England did SO BADLY. Oh dear.

Did I mention that on the way back from Chichester the car sprung a diesel leak and I ran out of fuel while passing a truck? Scary.

And had to wait on the motorway verge 10 miles from home. Never, ever nice, traffic whipping past at 80mph. I took my linen trousers and sparkly flip flops into the nettles and thorns, up the bank, I can tell you!

And did I mention that because one car is in the shop I did all the driving this morning: child to school, OH to work. And oh, deliver a testing kit to the OTHER child across town, because accidentally forgotten….?!

But we’re here. And we’re okay. As long as we keep our juggling hands free.

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

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 28 other followers

Distance Travelled

Disclaimer

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