Saturday 26 February 2011

Week Two with Lucky Pump

Please excuse my absence this week.
I am following all of your posts but finding very little time or energy to comment. You are all with me every day, I just don't feel up to much but getting to grips with this new phase.
But after my saint of a husband letting me lie in this morning I have time and energy for an update of our week:
Lucky Pump is with us all day, every day.
He comes cycling with us when Frank comes out to the local shops and the library with me, nestled in Frank's pocket as he races along.
We are in telephone contact every day with the hospital as we all work to fine tune the basals and we are testing BG all through the day and then at 10pm, 12 midnight, 2:30 and then on waking at 7am.
We work it thus: one of us does the 10pm and the midnight whilst the other, in theory, gets some sleep in the spare room in anticipation of doing the 2:30am test.
In practice, we both stay up until twelve and then whoever is doing the 2:30am test sleeps fitfully until their shift.
We are exhausted and the day before yesterday I broke down as I was so very very tired and yet couldn't sleep even whilst lying in bed.
My poor husband had to deal with a sobbing wife at one in the morning, convinced she was an unfit mother.
This new piece of kit attached to my baby clearly has me wired too.
It does not feel under control yet.
I lie awake watching him breathe and, tell me you don't do this and I won't believe you, having those dark nighttime thoughts that seem built into the human psyche about what a terrible person I am and wishing I was a calm zenlike mother rather than this complete mess.
Then sleep overcomes me after the final test and in the morning Frank wakes and smiles at me and says "Can I have a story?" and all is well. I feel like I have a newborn again as the nights are long, but this phase will pass and I will sleep for more than half an hour at a stretch again.
Andrew is amazing in this.
He has always coped more graciously with less sleep than me.
And on the up side: I love how the pump has made snacking much less of an obstacle course.
Today I made wholemeal chocolate chip cookies and Frank, who has declared he only likes uncooked biscuits, polished off the scrapings in the bowl.
How could I resist taking a picture of this boy, this wonderful boy, licking the bowl with such gusto.
This is how he lives life.
I have much to learn from him!

P.S. A quick kit question for you: What kind of little bags or packs are good for kids Frank's age to hold the pump? Where can I get a little bum bag for the pump? Well, we call them bum-bags over here, but I have heard them called fanny-packs in America (this for a British person brings a whole different image!).
What do you do at night?
Can anyone recommend some good stuff?
I'd be so grateful.
My love and friendship to you all.
I am always so grateful for your voices and thoughts.

Saturday 19 February 2011


Let me explain:
I am English and I do not, I repeat, DO NOT, us the word awesome easily.
A few years ago a Canadian cousin came to stay and when I offered her a cup of tea in the morning said "Oh, that would be awesome". I distinctly remember going downstairs to put the kettle on and thinking "No, love, it'll be just a cup of tea. A good one, I make good tea, but it won't be awesome. The Grand Canyon is awesome, a cup of tea isn't".
So, I trust it is now clear that I don't use the word awesome unless something earns it.
Enter our (yes, it's ours!) Medtronic insulin pump, which Frank has named Lucky Pump.
He has been wearing it full time and live with real insulin and everything (!) since Wednesday morning at the hospital.
I have not had to give my child an injection for three days now.
No cheeky Lantus to sting him every morning.
No getting his buttocks out for injections on the sofa or in cafes.
Naive I must be, as I hadn't realised how draining injecting had become.
I feel much lighter of spirit already dealing with this pump malarkey.
It's complicated in some ways but so logical in others and I can already, after just three days, see the details that will make micro-managing blood sugar so much more possible.
We are still in the very early stages of tweaking those basals and testing every two hours, right through the night.
I am tired but boy, oh boy, do I want this to work out.
The night before last Frank said "Mummy, two questions." I look at him and he went on "One: will I still be Diabetes when I'm a grown up?" "Yes, Frank, it's just who you are like having those long eyelashes or being good at running".
He smiles and I well up.
"Two:", he says "is there anything stuck in the bed covers 'cos I need to rescue them!" and he dives into the covers on the bed and goes searching for lost socks to rescue, Lucky Pump just trailing after him and him barely aware of it.
Something in that conversation grounded me.
The first question so seemingly huge from an adult perspective but the answer accepted so readily by a child who really just wants to do some bed clothes diving.
Frank is awesome.

Thursday 10 February 2011

Our week so far

Ok, so, here we are, Thursday evening and posting, finally, after a humdinger of a week (and it's not even over ...).
We made it to the hospital with both myself and Andrew having stomach pains due to stress. Once there we were greeted by Claire the fantabulous Diabetes Specialist Nurse (who has herself been Type 1 for 26 years. She looks about 12 so I have no idea how that is even possible!).
We then spent three hours with her and three other families learning how to navigate the Starship Enterprise, er, sorry , the Medtronic pump.
It went really well.
The other families were really committed, like us, to looking Diabetes in the eye and making their children's lives as healthy as possible. They too were freaked out and out of their comfort zones (if indeed poking your child to the point of bleeding several times a day can EVER be termed a comfort zone).
We played with the pump, had a go at changing the reservoir or setting it up and then I got to wear it for a while and showed Frank how it was inserted.
By twelve thirty we were left to take our box of goodies home and practise, practise, practise.
We have saline solution to use and Frank needs to get used to wearing it and will still need injections for this week.
After the hospital we broke the journey home by pulling in for a picnic in the camper van at a country park just outside Cambridge.
The sun was shining.
It was one of those days that herald the Spring and we loved strolling around (with sticks, in Frank's case) the 2,400 year old site (it had been an encampment and the earth is maintained to show the shape of the camp). If those dates make your jaw drop just think of the cheap motel we stayed in the night before that was right next to a Bronze Age burial ground, some 8,000 years old (give or take a month or two!).

This was all very grounding after a morning of huge learning.
Then it got interesting ...
On the way home my stomach began to feel unsettled and after about half an hour I pulled over and .. er .. lost my lunch.
Andrew took over the driving and I tried to lay a flat as I could, moaning on the back seat as he headed home.
Never has a journey felt so long.
Once home I made a dash for the bathroom and after an hour or so went to bed and dozed.
All plans to look at the pump went out the window with my lunch.
Next day Andrew had to work and I was OK but weak.
The only thing I had eaten that was different to the boys was a tuna bean salad.
Damn those ready made salads!

Then to round off the three days of lively times Andrew came home on Wednesday with a letter notifying him of the fact that he has six weeks until he will be made redundant.
However, we are fine!
One would think that this would be the worst week to hear such news but no.
Having a child with Type 1 Diabetes, for me anyway, puts much of life's other difficulties in perspective.
It's not as trite as the awful"don't sweat the small stuff" idea but there is a sense of gentle perspective.
All will be well.
All will be well.
Tomorrow we try the pump on Frank for 24 hours and then again as much as we can after that.
Next Wednesday we go "live".
Let's hear it again:
All will be well.
I am hosting my book group here tomorrow evening.
I chose Laura Ingalls Wilder's "The Little House in the Big Woods" and "The Little House on the Prairie".
Reading these books brings perspective too.
Love to all and huge great big and enormous thanks to all who wished us well.
Thank you.
I am so grateful for you.

Saturday 5 February 2011

And beyond ...

Oh, what can I possibly say to explain how I am feeling?
We have pump training next Tuesday and the following Wednesday at Addenbrooke's in Cambridge.
We want this.
Frank wants this.
BUT I am aware that I am feeling so scared and jittery and freaked out about taking on this NEW THING.
I've become so relaxed about injections and thought I'd be feeling great about the pump but, when it comes to it, diabetes just sucks, doesn't it?
Even when you have to do new stuff it's scary rather than exciting.
It's never like "Oooh, a new flavour of cheesecake, that'll be good".
It's "Oooh, shit, I might get this wrong and he'll bleed or be rushed to hospital or collapse or have ragingly high blood sugar for a while or ... or ... or ...".
Diabetes sucks.
I know this will be great for our ability to maintain Frank's health but I am scared.
Plain and simple.
Diabetes has so leeched my confidence and sapped my intelligence that I fear taking this on in case I am not up to the job.
I know Andrew feels the same.
I will be back next week with an update.
I believe we have a week of using the pump with a saline solution to get used to it before we are allowed to do the real thing.

So many of you have been here before and I had contemplated not posting about my wussy feelings but I do want to be honest.

Happy Weekend to you all and off we go ... to infinity and beyond ....

Wish us luck.