I’ve just been reading some really interesting articles in the Animas magazine (they manufacture Archie’s pump), by other children who manage their diabetes with pump therapy.  There’s no doubt about it, that to get the most out of the pump you need a lot of monitoring of blood sugars in order to identify trends, and know which of the rates or ratios to change.  It’s only as good as the information it’s working with.

This first week has been a steep learning curve and one of the most tiring weeks I’ve experienced since our children were infants.  I was delighted yesterday when we had a clinic review and both the doctor and dietician complimented us on our efforts and achievements for the week.  The nurse couldn’t praise Archie highly enough for his suggested temporary basal rate to correct a high on Thursday.  All that said, there is something so different about managing diabetes with the pump that we have to learn to trust it as a tool.

I’m struggling with the fear of high blood sugars and potential ketones, so letting go of night time testing is difficult.  Last night we had to work to get Archie’s reading from 13 later in the evening to within range before bed time.  Eventually it started to come down, but rather too quickly! This left me unable to sleep and testing every 2 hours to ensure he didn’t hypo.  Eventually I had to reduce his basal rate by 20% for an hour – a decision I was making at 3.30am in the morning and hoping it was the right one as I was working partly on gut instinct.  Anyone who lives with type 1 knows that managing it is a science.  Understanding it’s complexities and applying those to each individual with the condition is an art.

There were tears this morning, and not from Archie needless to say.  Frustration with Archie’s high reading, tiredness and my own early hypo all got the better of me.  The relentlessness of this condition however means that you can’t give in to any of those emotions, or it beats you, and then it’s controlling your life, rather than the other way round.

I’ve been wanting a pump for a few years now, and it’s within sight, but I really thought twice about it this morning.  Then as I reflected over the events of this week, I thought about the difference it had made in such a short space of time.

I have hated saying no.  No you can’t have an ice-cream, although everyone else on holiday is having one; no you can’t have another slice of pizza even though all your cousins are back for seconds; no –  I know your hungry, but extra carbs now will wreck your blood sugars; no – you can have a bit of the biscuit, but not the whole thing.  It’s devastating seeing your child cry because of those answers and know that they think they’re being punished for something that isn’t their fault.

So this week has been amazing; to be able to sit in cafe Nero and say yes you can have the whole gingerbread man and the milk – all we have to do is count it properly; or, in Sainsbury’s – you can pick what you want for tea – all we have to do is weigh it all out and calculate the carbs when we get home; and telling Granny that dinner can be after 6pm because the pump has that flexibility.

What a difference a week can make – highs and lows emotionally and physically, but capped off by a few words of encouragement from one of Archie’s sporting heroes and fellow type 1 diabetic Gary Mabbutt.  “Great that you are doing really well with the pump Archie, all my friends who use it are very impressed with it.  I am being encouraged to go on to pump as well, it’s supposed to give you a lot better control, which is important for us diabetics”.

Pumped or Pooped?

Exhaustion is slowly consuming us all!  We have now had 2 nights of waking hourly and two hourly to check blood sugars.  Alarms have been set on mobiles as a reminder to get up and go and do the testing.  The first night was very organised and we did shifts.  Last night as tiredness overtook us all we agreed similar shift patterns but opposite times from the night before.  Unfortunately alarms were going off in sync and at 6am Cormac woke me to check it was 6am  – “yes it is 6am, yes it is your turn to test and yes I should be asleep!”  Of course the Archmeister slept through every test administered.  He’s also sleeping on a make shift bed this week as Grandma is here, so all these tests are being done on hands and knees in the dark – although cleverly, Cormac downloaded a torch app for his phone; unfortunately it didn’t help him when he needed to know if it was 6am?!

Apparently we’re doing well!  Rhonda and Julie have stepped up to the plate to look after us in the absence of our own DSN who was taken into hospital with suspected appendicitis on the day we started pumping – I’m sure it was just a coincidence!  Both nurses have been brilliant – guiding us through high blood sugars, corrections, temporary basal rates and changes to carb ratios.

Tonight Ballymena held it’s first Diabetes support group meeting which Archie and I went along to.  Guest speaker was Calvin Elfrin(Belfast Giants player) and he spoke very positively about being type 1 diabetic and a professional Ice Hockey player.  It’s great for Archie to identify with positive role models and see  that anything is possible.  Interestingly he said that the pump wasn’t for him; he had tried it, but found it needed too many changes over the course of a day to work with his sport.

We’ve had another set of high readings to manage tonight, but  we’re already thinking in pump language and it’s becoming easier to do corrections and temporary basal settings.  The night-shift planning looms – less onerous tonight with just 3 checks required at midnight, 3am and 6am.  We might get a decent nights sleep and at least partially recharge the batteries ready for pumping tomorrow.

Pumpmania

This is our update on day 1 of Pumpmania.  When we got up this morning the excitement was palpable.  The last scheduled injection was with breakfast and was in itself a change to a rapid only injection, no more long acting insulin.  The green pen is now resigned to the cupboard, which is a bit of a relief,as it’s the same colour as mine so very easy to get mixed up.

Our appointment with the Diabetic Nurse, and  the pump rep was 9.30am this morning. We arrived all prepared with our Star Wars lunchbox, filled with everything except lunch – blood test meter, animas pump set, pump cartridge, insulin vile, spare battery, emergency sweets, record book, pencil, novorapid insulin pen (incase of pump failure), blood ketone meter and ketone strips.  This will now be the standard equipment we take with us everywhere.

Straight away we set to work.  I nearly broke into a cold sweat as Aileen the rep asked me to draw up the insulin and fill the cartridge for the  pump.  “What comes next?” she said; I looked blankly.  “I’m sorry” I said, “but I don’t have my step by step guide (currently stuck up on the side of the fridge) to refer to.”  “Oh of course” she said, and produced one out of her bag.  What a relief!  The pressure of trying to do this for the first time unaided, with all eyes on me, was too much.

We worked through filling the cartridge, putting a new cannula on Archie and answering the barrage of questions being fired at us to make sure we knew and understood everything.  “What do you do if you get an occlusion in the pump?” she asked.  I looked blankly at Cormac who pulled some genius answer out the bag.  In the car on the way home after he said, “Do you not remember them talking about that all the time in ER”.

So after another hour of training and a first bolus of insulin delivered we were sent home with instructions for blood tests every two hours and the details of the records we had to keep.  We have worked all day as instructed and so far Archie has had 9 blood tests.  We have managed to successfully stay in single figures, so no adjustments required just yet.  Archie has also so far reaped the benefit in his food consumption; a full tin of tomato soup and a cheese toastie for lunch – unheard of prepump because of the rigidity of his injection doses.  Amazingly afterwards, no spikes in his blood glucose levels.

We did have one minor mishap today when he inadvertently pulled the cannula out of his hip when he was hiking up his trousers.  A shout from Cormac to my mum and I was tracked down in the toilet; couldn’t even manage a wee in peace.  Anyway we speedily rewound, reprimed and reshot him with a new cannula – so major incident averted.

As I was writing this earlier and feeling pretty satisfied with our efforts today, we did the 8pm blood test to find blood sugars had rocketed to 20.5.  That feeling of anxiety and panic just grabbed me by the throat, and was exacerbated when the diabetic nurse on call wasn’t answering the phone.  Immediately we did a bolus correction and then the pump prompted me to check the cannula site and check for the dreaded ketones.  Site was fine, so grabbed the ketone meter only to realise after much poking and shoving that the test strips we have been given aren’t the correct ones.  So then had to ply Archie with loads to drink so we could get him to pee on a stick.  All clear though so thank goodness for that. Much to our relief the phone rang and it was a different nurse (ours was sick), so she talked us through a temporary basal rate with instructions to text back at 10pm.  We currently have the pump set for 120% basal rate for 2 hours to work alongside the extra correction bolus we gave, so fingers crossed for the next test.

It’s been a long day so far, monitoring bloods and looking for any physical changes in Archie, but on the whole it has gone better than I expected; that said the nightshift is ahead of us, so we’ll see how that all goes.  I asked Archie what he thought had been really positive about today and he declared without hesitation “no injections”.  Small steps today on the road to Pump success and some freedom from the constraints of Type 1.

The Night Before Pumpas!

So, Archie has just had his last Humalog 25 mix injection!  Tonight is the eve of the pump.  We have been practicing all week with set changes, cartridge fills, basal rates and bolus calculations, as well as carbohydrate counting every bit of food and drink consumed.  We’re all a bit nervous about the change, especially taking away the safety net of the long acting insulin (which reduces the risk of toxic ketones in the blood), but are hopeful that the new pump will provide more flexibility, fewer high and low blood glucose readings and generally a better quality of life for Archie.  For him the big incentive is 156 set changes (this is the cannula device that sits under the skin and allows the insulin to be delivered in small amounts continuously) versus roughly 1450 injections a year – it’s a no brainer!  9.30am tomorrow morning and the big switch over happens!  We then have 2 hourly blood testing for the next 48 hours and thankfully a brilliant Diabetic Specialist Nurse on call during that time.  So we now just have the nervous anticipation of what’s coming tomorrow – a bit like when Santa comes, only this gift is delivered by a little rectangular green pump instead of a round man in a red suit.  So Happy Pumpas Eve and hopefully a great day ahead tomorrow.