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Of course I cannot go another minute without noting the progress of our kitten babies since I posted in the autumn. This is what they looked like at about 14 weeks. R had gone into the bathroom (where they had been placed to be safe from the vacuum cleaner!) to collect them all up to take to the vet’s for their vaccinations… and he found this. They climbed up there all by themselves. The caption is his:

 

"But we don't want to go to the vet's..."

 

Since then, three of our lovelies have moved on to happy homes. Eudora — Miss Fiesty and adventurous, first out of the box and always up for a good time, was first to do in early December — on a plane back to the States with my sister, B! Oh yes indeed. Little Eudora was apparently a real trouper, traveling to the airport, on an eight hour flight, a two hour stopover, then another hour flight and another drive — all in a gorgeous padded carrier. In hand luggage. Wow.

Artemis and Athena went together to a fellow musician and sister-in-law of a work colleague. We met on a snowy day in the middle of England to do the transfer. The family have always had long-lived, indulged cats — and from the pictures being sent back to me, they have already started down the road of happiness there! Artemis and Athena both emerged as company-needing, extremely loving, cuddly cats. They desperately needed to be together, so I’m so glad they could be.

It’s been a real joy to give them such loving homes. A great relief.

So we have Archie — Archimedes — now as the sole little one. He’s the really laid back kitty second from the right. He and Schubert have a good relationship, sometimes sleeping together and often playing. Schubert can nearly squash him however! But Cleo (mum) almost always gets cross at Archie. She sniffs and plays a little, then growls and bats… It’s kind of sad. Poor Archie. He rolls over and gazes up at her: love me!

He cried for two days when the others went. And the grown up cats were like what you want us to play?! Where are your friends?

He is a stunning young lad though, just beautiful, and very loving. I think sometimes he is still a little lonely — and a mixed message mum doesn’t help — but we give him all the love we can. He also likes to sit and stare at the guinea pigs, occasionally prodding them gently. Bless. Shall try to get a good photo of him as he is now.

***

I’ve sort of thrown a table of blood sugar levels into the sidebar for people’s reference. I talk so much about levels and what is target and what is low and what is high, that it does seem a good idea to follow my sister B’s suggestion of putting up the basic info. The sidebar widget though doesn’t have any formatting with it unless I write it in HTML, which I don’t really know…so it’s really DARN basic right now, though I’ll keep after it.

I did want to say though: notice how narrow the target range is. And shall I shock you by saying that in the last two years I think that there have only been about four days (eg 24 hours) when all of the fingerprick blood tests have shown E in range. Of course between them he may have been all over the place. And what’s for sure is that generally he’s all over the place. As everyone with diabetes often is. This morning he woke low. Before dinner last night he was high. Etc.

No wonder it’s easy to feel like you are always, always doing something ‘wrong’. Not to speak of fighting a losing battle.

Also just to let you know: E was 32 mmols at diagnosis. And on Sunday I heard of a friend’s relative who was admitted to hospital with a level of 72 mmols.

So aiming for 4-8 mmols can sometimes feel like threading a camel through the eye of a needle. Despite all the hope of reduced complications it brings.

 

Don’t like ’em. If anybody asks. No, I really, really don’t like them apples.

We woke E on 1.7 mmols this morning. After going to bed at 6.9 mmols. After five days of being steady (except for the messed up dual wave!) through the night, eg going to bed on 7 mmols ish, waking up on 7 mmols ish.

No extra insulin on board. No exercise.

He was ‘fine’. Felt a bit ‘strange’. And that’s what scary. It’s too low. Many would be out cold with it. It’s dangerous. And he was sleeping.

Now, on top of everything else, have to watch levels don’t get even remotely low over next 24 hours. Because, as many will know, hypo begets hypo. And the chances of having another severe one is something like 30% higher in the 24 hours following one.

Already we see the ‘bounce’ back from it. He was 11 mmols at breakfast.

Welcome to the inevitable roller coaster of post-severe-hypo.

So no, don’t dig these particular apples myself.

***

Tell you who does though:  Mimi and Peaches. Who are home and frisky. And munchin’ them apples.

As I’ve mentioned, one of the most remarkable side-effects of all this diabetes-debacle (DD for short!), is the straight-to-the-heart experience and belief in the value of connections. Having diabetes and being a carer of someone with diabetes can be tremendously, tremendously isolating. It’s invisible. At a glance everything seems okay. But underneath, behind the scenes, there is necessarily constant, stressful, vigilance.

Being connected with people who DO understand is as important as setting out your stall and saying hey this is what it’s like to people who DON’T understand (yet!).

So. As a start, my blogroll in the sidebar is now beginning to reflect the incredible range and commitment and energy of some d-bloggers. Check these folks out.

I’m picking up a few more through Twitter…A surprisingly interesting venture, actually. Aside from the haiku-like nature of the entries, which I find inherently pleasing (surprise, surprise), connections have been made very quickly, and I now have people contacting me from all over the world with diabetes-led tweets and blogs… One entry re-tweeted (ah, the lingo!) to me yesterday, about the idea of ‘normal’ in a diabetes context, is just a FAB post.

***
Update on other fronts: E has had a run of great numbers, and we’ve had three nights of sleep! Yay. Just in the nick of time. OH is down with a draggy cold thing, M is home from school with same, and I can feel my throat tickling…

The peculiar thing is two days of an odd number, very high, at 4pm. What’s going on?! This time of day is an almost guarantee HYPO time for E, if we don’t get it just right. He has ALWAYS been this way. So three days ago he was 14.7mmols (big time YELLOW number, ‘hyper’), and two days ago 16mmols (double ergh). Checked that he had remembered to bolus (the insulin with the food) for lunch, and that his/our carb counting was okay. Yes to both. So we adjusted both basal (drip feed insulin) and the lunch ratio (the proportion of insulin to grams of carb). It’s worth saying here that all insulin levels, whether basal or bolus (ratio-based), differs person to person, time of day to time of day, depending on the body and its metabolism etc. Amounts of insulin also change according to things like temperature and time of life/hormones…. Anyway, E’s ratio at lunch is usually 1 unit of insulin for every 9 grams of carb (1:9). We lowered it to 1:8, so that he would get more insulin for his food intake.

So it follows in the upside-down world of diabetes that yesterday at that time he’s plummeted to 4.1 (RED number) and feeling rough with being low. Sigh. The irony of it! We will keep things as they are for today, and if he’s low again, slowly pull back and reduce the insulin once again… It’s a sensitive time of day for him, clearly…

***
Also, for those of you with a fondness for rodents like my daughter, Mimi and Peaches are STILL at the vet’s. This morning however we have good news: Mimi is now very perky, running around, and we hope to have them home by the weekend.

Daughter M is withholding excitement and hope thus far though…This is something which has developed from E’s diagnosis, and is, I’m sure, inevitable in life.

And that is: the knowledge that life as you know it can turn on a dime. That in truth, anything can happen. She knows this deep down in a way that I wish she didn’t. E’s diagnosis completely unravelled her — this is a girl who has always dreaded leaving last year’s teacher, who still, at nine years old, visits her nursery school. Her loves and loyalties are deep and fierce and admirable, and her security comes from physical connection. When her brother’s life changed, her world view did too. She experienced — with an articulacy far beyond her years — and felt — every day, for months — a grief for what she thought the shape of her life was and always would be, and now wasn’t. It’s painful for me to think about. But that’s what happens.

Quite a bit to mention…As I become more used to this again, once again it becomes clearer what to say. Like writing. Once the fluency is there, the facility, the naturalness of it…It’s all easier to do. Flexing the muscles.

1) Semi MC-ed the competition awards for the wonderful writing group Save As last night. What a treat! The work was fab, and the people great, and it was so very good to see so many from all over, from so many groups and walks…All for writing, for listening, for appreciating. Loved it. Read a bit from the developing memoir about diagnosis and subsequent feelings. Bit harrowing! But done now.

2) A GREEN day two days ago. Joy of joys! The THIRD in 15 months. Remember ‘green’? When blood sugar numbers are in range? Just to set the record straight: E has actually REALLY good numbers. We work hard for it. He works hard for it. And it’s a big pain in the backside. His average readings are actually very good for an adolescent, for which we breathe a sigh of relief. Consultants are delighted with him. However. Even with a laudable HbA1c (average blood sugar level over 3 months), he has only had 3 all green days in 15 months. Imagine this. Over 50% of the tests are not right. Not in range. The overall is good, but the daily is crap. The frustration is nightmarish, for him and for us. Once again, we are at the ‘you can’t win’ scenario. It’s no wonder that for so many, giving up is the next step. You can’t get it right.

There is a flipside to this. You can’t get it right, but in the end you are winning. Slow and steady wins the race. In this for the long haul. Don’t sweat the small stuff. That’s the good way of looking at it. When you can bear to look at it at all, that is!

***

In a section all its own is the recent private viewing I attended by our gorgeous and mega-talented dear friend, Nancy Wilson Fulton. It was a special evening. Her photographs positively glowed from the walls, seeming to make space where none had existed before, like the back of a cupboard leading to C S Lewis’s Narnia. 

Remarkable. Felt quite choked up. M went too, and steeped herself in her favourite friend’s artwork. They are like peas in a pod. The best bit: when asked by a dear friend of Nancy what animals she liked best, M replied, with some hesitation but a fixed determination to tell the truth…’Rodents, actually’. A bemused silence ensued.

Bring on Mimi and Peaches! (Still in vet, sniff!)

Here is Nancy’s website and her Flickr site. And here’s news about the exhibition. You have to drink it in.

Deep breath, and we’re here.

Mimi and Peaches are at the vets.

BUT doing fine. Mimi had the sniffles. Suspect that this is a price of being so VERY beautiful.

E’s blood sugar numbers have been perplexing-ish, but no nightmares. OH enters all the values (6-10 finger pricks a day) into the computer. Each value comes up RED (for too low, <4 mmols, eg ‘hypo’), GREEN (for in range 4-8 mmols) or YELLOW (>8 mmols). We look at patterns of numbers that are out of range (the red and the yellow), and try to see what can be shifted. At best, 75% of the time it looks like something can be done — it’s worth a punt to change the insulin and see if it settles. The other 25% of the time we treat as blips: why’s that number out, we ask? Just because, we answer. And try to laugh.

OH also enters how each hypo is treated (how many grams of carb consumed without taking extra insulin), any problematic foods and how they were dosed (eg spreading the insulin out using a dual wave — which type of dual wave, what percentages, for how long?), any changes in basal (the constant drip of insulin, as opposed to the bolus, which is the one-off insulin taken for each gram of carb eaten) for exercise or illness, etc…

***

This is what E does each day: tests his blood before every meal and most snacks, and usually 2-3 hours after eating each one. Also tests before bed. Estimates any grams of carb not figured into his meal. Controls his pump: inputting any changes to his regime (almost daily at the moment!); entering blood sugar levels and the amount of carb in every meal or snack, in order to help determine how much insulin to deliver with each meal or snack. Remembers to do this! Make decisions about how much exercise he’s had and what adjustments to his insulin to make as a result.

Every night he tolerates us testing him at 2 or 3 am. Every weekend morning he tolerates us testing him at 8 am, before he really wants to wake up.

Every three days he changes his set. 

This is what we do every day: make sure all the above happens, to the best of our abilities and without nagging. Weigh and measure all of his food, in order to calculate carb intake. Enter his blood sugar values and foods etc on the computer, in order to spot patterns and make changes. Decide whether to make changes. Be at the end of a phone, in case he texts and needs advice in the day.

Blood test him when we go to bed, and in the middle of the night. 

Every three days OH fills an insulin reservoir, in preparation for the set change. Remember the set change days.

Keep track of blood test strips, lancets, insulin, batteries, reservoirs, cannula supplies. As well as hypo treatments, upstairs in his bedroom, and downstairs in the cupboard.

Keep decent, healthy, low carb (NOT low sugar, this is different) food in. Do not resort to pasta or rice on days when you don’t know what else to make (these are very difficult to dose, and sometimes just not worth it).

Keep track of local and pump consultant appointments (two different hospitals), eye screening, flu shots.

Liaise with school for all trips, everyday regimes and any practical difficulties. 

***

I’m sure I’ve forgotten something, but oh well.

Every child with a pump and his/her family does these things. And every adult too — usually with sole responsibility. 

Every person with insulin-dependent diabetes (all type 1, and some type 2) does a version of this sort of vigilance in order to achieve anything close to ‘good control’.

Just thought I’d write it down. 

***

Saying all this, the sun IS shining. We’re here.

It’s incredible how much life can accommodate. But no surprise I guess that sometimes it’s a bit too much.

Though not today.

After seemingly solving high night time blood sugars through a tiny raising of insulin, over the last two nights we’ve had to steadily drop it down again. Sigh. He woke up one morning VERY low…We’ve been lucky that he’s never been so low as to be unconscious or not able to look after himself…but some people with diabetes, when they encounter numbers as low as he has had, find themselves unconsciousness, or worse.

SO. We had two nights of unbroken sleep (the first since Christmas), but are now back on the treadmill of night testing. Things are just too unpredictable at the moment.

***

All that aside (yay!), meanwhile two more furry creatures have entered our lives. Meet Mimi:

and

Peaches:

They are very gorgeous, good fun, cuddly, and make a pretty hilarious soundtrack, with their squeaks and boinks…

This is the first time we have ever had guinea pigs, and they arrive after three years of soulful longing by daughter M, who had reached the point of weeping when we left pet shops, and railing against all who keep pets and don’t take care of them, because she would do so much better a job and REALLY love them…This is all true, of course. Love them she does, taking full responsibility for feeding and cuddles.

The cats of course are bemused: what could possibly lie behind that closed door? Obviously, we aren’t letting  them in there yet. If ever. Schubert has caught an astonishing array of beasties in the garden over the last couple of years — countless voles, mice, a snake, three birds, two rabbits….I know, I know. It’s a bit much. So we are being wary, to say the least. Last night I had to get up and put a suitcase in front of the door, they were scratching at it so much. It’s cat-night-fun as much as anything, I’m sure…

***

Also in this category was a happy gym morning yesterday: this time another song from E’s playlist, and one that is so bouncy  and postivie that I never do anything but smile when I hear it. I realise now that the ups and downs of all this often bear little relation to the ups and downs of blood sugar numbers. They are as much if not more to do my own relative fragility. Anyway, the song. Peace and love man…

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.