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Is it very bad if I take this one chance in two weeks to post – seeing as I’m sequestered in a Starbuck’s waiting for straggling students. Straggling and bedraggled as it turns out, in the light rain.

We are in town ‘doing’ some psychogeography – a walk following an algorithm. But it’s wet, alas.

So. News in brief:

1) E again running high in the mornings. Growth. Herewith ends our 2 week stretch of unbroken nights. We must get up and test to try to ascertain at what point he is rising…

2) but not react too aggressively because from Sunday he is away in Wales for a week, no running water, no electricity. Snowdon to climb. Heart attacks to give his parents. He will set running a little high (but not too or he will feel rough and be low energy) the whole time. Hence we go easy on the night levels. For now.

3) this trip should be fine. Should be great. Everyone is prepared. My motherly concern is that he not feel too alone in having to deal and make so many hour by hour by minute judgements in the no doubt changing and out of routine environment. We shall see. Gulp.

4) term has started for me. Hence the headless chicken thing. I think I will come up for air around early November. Alas again.

5) it’s raining. I said that, didn’t I?

6) the KITTENS are spectacular. Like popcorn. Heads held quizzically. Napping in the most awkward positions (sliding down sofa arm, in someone’s crossed ankles). Photos. Will add vid when I get home.


They are now of course escape artists so are underfoot all over the house. And unbelievably lovely. What an experience. And mama Cleo has just been so happy, calling them, checking on them, grooming them. Even though they are weaning. So salutary really….

7) we went to Cornwall for a flying visit – very gorgeous. St Ives Tate, surf beach, and the Eden Project. (sorry, will imbed links at home!) Glorious weather and a special gift of a time, just before we go blinkered for three months…


— Posting on the move, tiny screen!

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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.

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!

But we don’t. After thinking the high numbers of the last post were set probs etc, here we are on the third day since the last change and ALL IS WELL. A relief. Stable ish numbers. A night’s sleep….

And lovely Cleo has passed the worst of being on heat. After two nights locked in the bathroom she’s to all of our great reliefs a bit more settled. Phew! No more earplugs, and a bit happier a cat….

Finally, exams: I phoned the school and they suggested 10% extra time to account for E’s lack of concentration. Which he has done.

It’s good to get in the habit of being obvious and up front about all this: hypo or hyper, he can lose at least 15 mins of a test to treating it. Now, he’s a VERY bright boy. He would do ok no matter what. We know this. The school know this.

But he never complains. He gets on with things. He thrives and excels. So when he says he thinks his performance is affected by his diabetes, the school listens. They want to set up similar formal provisions for him for GCSEs. Just to give him the best of all possible worlds.

They believe in him and trust him. I was quite choked up on the phone, hearing how much they thought of him. In his RS public exam the next day (part of a GCSE) his numbers were fine. But arrangements had been made for him to sit close to the door. All of the invigilators knew the situation. He came home saying he felt so much better now that nothing was unknown. Before he had gone into every exam explaining…. Uncomplaining and necessary, but hard work I’m guessing before an exam.

Anyway. For the first time I feel, tentatively, that the school is beginning to understand….

***

Morning at the hut.

– Posted using BlogPress from my iPhone

By now you can take a wild stab at what happens after I quietly whisper ‘numbers are more stable’, as I did in the last post. And you’d be right. THEY GO CRAZY!

Stability has been out the window off and on now for a few days. Why oh why? We don’t understand. We wonder if these new sets are starting to lose effectiveness after two days rather than the three of the old sets. But this hasn’t happened consistently, certainly not since the beginning… Can it happen suddenly? Who knows? Who flipping knows?!

So suddenly he wakes high yesterday, after 1.5 days with the set. We battle him down a bit, but he’s still pushing high. Battle down. All through the night we battle down, testing 4 times, running a fairly high temp basal.

Wakes at least stable from 4am, though too high, 12mmols.

Corrects like mad. Goes off to school and EXAMS with a temp basal on. We don’t want to send him low because of exams, but not too high either because of exams — both ends affect performance — so he texts back at 11am that he’s 17mmols.

Argh!!!!

Corrects, and raises temp. 13mmols at lunch. But then, suddenly, coming home he’s 19mmols! What?!

We’ve whacked the temp up to 200%, and corrected, and an hour later he’s still only 16mmols.

Argh!!!!

And to top it all off, he feels that his performance today was affected by being high. He had a hard time concentrating, needed to pee through half the exams, and had run out of water mid way through another.

You know, honestly. You want to climb into a hole. How unfair. I’ll phone the school tomorrow, but I don’t know what can be done…

It’s three days tonight since a set change. So we will change again, yes. But it’s been going wrong for half the time the set’s been in.

What the heck…

I’m sure I don’t even need to mention how very much I wish I had been able to be in my hut watching the sky rather than typing up reports and supervising the electricity man replace the meter and helplessly fielding texts from my struggling son. WHO DIDN’T ASK TO STRUGGLE LIKE THIS FOR HEAVEN’S SAKE!

***

And to top it off our beautiful girl cat is in heat in the most LOUD and DISTRESSING way. She sounds distressed and upset ALL THE TIME. We can barely talk over her. We are planning to try to get her pregnant in late June, for the timing to be right…Meanwhile I barely slept last night what with all of her pounding around and complaining, and being up and down like a yo-yo testing…

And the sun is shining and I’M NOT IN MY HUT. And feeling sorry for myself. And for my son, who really did nothing at all to deserve this. Bad luck, hormones…who knows. But he’s on a roller coaster at the moment, and all we can do is just keep running the insulin in:

And try to get the tub full QUICK…

Dammit.

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.