Thursday, 30 August 2012

Changing the rules...

Let me start by saying that three weeks in and we are loving the pump. As we had hoped we have better control, less fluctuating levels and a happier Samuel, which is all great. What's taking me slightly longer is the ability to forget almost everything that we have been doing for the last three years. Obviously the 'diabetes' is the same. It's still unwelcome, annoying and doesn't follow the rules. Any parent of a type 1 child would agree. What has changed is the rules in which we follow when attempting to whip it into shape!!
The main rule change for us is the for the treatment of hypos. When Samuel was on mdi, we would treat a hypo (bg below 4) with fresh orange juice, wait 10 mins, re-test and if above 4 we would give two biscuits. Actually, the three girls would quite like it when he was low as they would also get two biscuits.
However, it is slightly different on the pump. 4 is still the floor and needs to be treated but we now follow the 15 rule: Treat with 15g of fast acting carbs, wait 15mins, re-test and if above 4 that's it, not further treatment is required. This has not gone down too well with the Warrington children!!
I also have to remind myself that if the levels before bed are between 4-5 that actually its ok, whereas on mdi, that would be too low and he would need a snack.
I wouldn't change it for the world now though, it just takes a little bit of time to trust the pump, but I am getting there.

Saturday, 25 August 2012

Pumping Insulin....

Samuel has been pumping insulin for a few weeks now, he went 'live' on Tuesday 7th  August 2012. We started this journey with another family, Magda, Ben and 7 year old Kita. Samuel and Kita became firm friends straight away, which was lovely to see as Samuel doesn't really know anyone his own age with type 1 diabetes, and I feel very lucky to have met Magda, it feels like I have always known her and it is lovely to have someone who is going through the same process at the same time. I have lots of support from the diabetes on line community, but it isn't the same.
Pump school had arrived very quickly for us as we were given a cancellation appointment, so although I had some idea of what it entailed I didn't really have a chance to get myself worked up about it. Olivia had made a countdown chart so that Samuel could cross off his remaining injections, and week were all, as a family excited. It would mean a better quality of life for Samuel, better control and more freedom.
The night before I have to say I had got myself in a bit of a state, even though I had been fighting for this for a long time I was overcome with nerves! What if I did something wrong? Did I push Samuel into it? Was it really the best thing to do?
I really shouldn't have worried, everything went really well!
Samuel loves his pump!! On our way home from the hospital we let him have a bar of chocolate, and he looked at us and said 'it's been so long since I have had one of these (mint aero) I can't remember what it tastes like' he enjoyed every mouthful!
He is a completely different child, he doesn't have the mood swings that he used to have as we don't have the huge blood glucose swings. His levels are much more settled, in the first two weeks I think he has only 4 readings over 14, which for him is amazing!

Was the fight worth it? Absolutely!
Was the two hourly testing worth it? Yes! (although I won't lie it was a killer!)

The team at UCLH have been amazing, the support for the first two weeks (daily phone calls) was fantastic, they have given me my son back.

My only regret is that I didn't do it sooner!

Friday, 3 August 2012

Pumping saline!!

Now, I realise that I have been really slack these last few months with my blog, sorry, however I have some truly fantastic news.
I have wanted Samuel to have an insulin pump for the last year or so, he hadn't shared my want! We had been plodding along for three years, and I knew it was time for a change. Our local hospital do not provide a pump service so in order for us to get a pump I had to change Samuels care. This worried me to begin with. The DSNs had been fantastic since Samuels diagnosis and I almost felt if I was betraying them by going elsewhere, but I knew that if I wanted a pump for Samuel that I would have to do it. As luck would have it I work at the hospital that some say is one of the best in the country as far a treating children with diabetes, and the Prof is the best in his field. So I requested that we be referred.

It then went completely crazy and I was totally overwhelmed!

I had a phone call to say that we had an appointment on the 16th July '12 to meet the nurses. I had discussed this with Samuel and he was keen to go, although he had not confirmed that he was indeed going to have a pump. We went to the appointment and after sitting the the nurse, and playing with the play therapist Samuel gave us a double thumbs up!! We were then given an appointment to come back for Samuel to try a pump, to see what he felt about it being attached, if he could sleep with it etc. I was expecting the appointment to be after a couple of weeks, but no we went back on the 18th July '12. At that appointment we were told that there was a place for us at pump school on the 31st July '12 if we wanted it. This meant that Samuel would be pumping insulin on the 7th August '12!!
I was completely overwhelmed! I couldn't believe it was happening so quickly....
So, tonight as I write this,  Samuel is pumping saline! So far, so good!

We can't wait until next week!