Blimey, its been a while! Isn’t it annoying how life gets in the way of doing great things. I so enjoyed writing about Joe and Tom first starting on their pumps – and now it feels like they have been using them forever. It is actually only 91 days since we had insulin put into the boy’s pumps and stopped doing any injections. I feel shocked when I realise that, because life has changed so much for me since then. Not all of this is down to the pumps, but a heck of a lot of it is!
Okay, my mum died on April 7th. She had been ill withcancer for quite a while but it still was a very shocking moment. As this blog is about using insulin pumps and living with Insulin Dependent Diabetes Melitus, I am not going to pour my heart out here about the emotional turmoil this has thrown over me. Instead I am going to describe my life within the context of diabetes. So that makes me feel like what I am sharing is relevant and not just sentimental or personal (if that makes sense).
Joe and Tom began pumping with insulin on March 18th, and my previous posts cover that period of time. I’m not sure where I left off but I suppose the first holidays from school at Easter, which also began with mum dying, are a good place to get going from. I had been in school daily with the boys when they went back to class a week after live insulin. I’m glad I had that time at home with them because this period of going to school with them was very tiring. It was useful though; it helped the wonderful lady who is responsible for Joe and Tom at school to feel supported and to ’see’ the record keeping and changes I was making using the results of their blood sugar tests. If you don’t see the point of doing these BMs, you can assume they are only to keep you aware when you are going high and low. Yet they are actually so much more than that; they are the integral part of managing daily the basal rates and bolus ratios the children have programmed into their pumps. Some consultants even don’t get this and think the goal of diabetes management is to avoid as many of these BMs as possible. You know, if you start with that idea it can get very dangerous when you are a teenager and wishing this whole thing would go away. (Better to do 8 Bms a day and reduce this to 4 when you want more independent control, than to be doing 4 and go to nothing! Just my philosophy!)
We travelled up North where all my family were gathering, knowing that mum had become far more ill very quickly and had gone into a Macmillan Hospice (brilliant places – give them your money and support). Tom was sick as we pulled into dad’s drive, literally as he got out of the car. I didn’t panic too much at this. I thought maybe he was just getting one of his old travel sickness bouts, even though he seemed to have far fewer recently. Then he was a bit picky about his food. Again, maybe old form when under the intense pressure of a close relative dying. Then Sunday evening 9pm, proper sickness and full blown both ends gastric illness. I mean, could there have been a crueler thing to happen just at that moment?
This was where the pump came into its own. Tom went hypo, obviously. He was down in the 2mmol range. With a stomach full of bubbling goo he didn’t want to eat anything at all and we only just managed to persuade him to drink some ribena to rinse his mouth clean. On injections we would have known at this point that we couldn’t manage this situation without hospital. Not so on the pump! We removed his pump so that he had no basal insulin going into him at all and kept coaxing him to drink small sips of his ribena. It took about thirty minutes but his sugars did eventually come up and we reconnected him on a 50% basal to begin with. However, we had to do hourly – and even more at some points – Bms all through the night. Given that my dad had stayed away at the hospice, I got very little sleep at all, if any. I couldn’t switch my brain off between Bms, so lay there thinking and worrying about Tom and my mum all night.
Mum died in the early hours of the morning. My brother came through to tell me and we just lay and hugged and cried and then went about the house telling everyone else. Tom woke having not eaten all night but having kept pretty good levels and decided he wanted to eat some cereal. I had to put Olly in charge and back away as much as I could. There was just so much grieving to do and my dad to support.
Anyway, Tom went from having a 50% basal to needing a 150% basal over the next day as he began to eat again. There were problems with malabsorption to deal with; foods doing unexpected things and hypos or hypers following due to the gut being under pressure from the gastric bug. However, the pump conquered all. It was truly magnificent in this situation. Then I got the same bug on the Wednesday and that was it. We just had to leave asap in case we gave it to everyone else. So, we made the 7 hour journey back to Whitstable with me feeling pretty darned rotten and everyone very tired and emotional. Thankfully no one else did get the bug, not even Olly and Joe, so it must have been in Tom’s class that we got it whilst i was in school.
We went back for the funeral and the kids were blown away by the fact they could bolus for individual drinks and food at the wake after. The emotions of the day made great swathes through their control, swinging them high and then low. I had my bag crammed full of snacks and lucozade so that the D wouldn’t impact too much on the funeral itself. We all got through it.
Then Tom went away the week following our return. It was his school residential, which Olly went on with him as a carer. They stayed in the same room so that Olly could hear the pump with the sensor alarming in the night. It was a good job too as some nights were more active than others in the D department. Joe had done the same trip a couple of years before and comparing the levels he had to put up with, with those Tom managed on the pump (even though still so new to it all) was fascinating. Tommy had some moments of panic with lows and highs but far fewer than Joe and not bad at all considering Olly was having to guesstimate carb counts for the whole week and do temp basals to cope with zip slides, climbing, adventure playgrounds etc etc.
Tom came back happy and confident. He could tell how much the sensor had given him over the week and could see that it might be worth putting up with the 5 minutes discomfort of having them put in.
And that feels pretty much like that. We have had a few more weeks back at school and Tom has been having the best levels of his life so far. He rarely has a hypo at school and is able to look after himself for the most part. The TA still checks he is on a good level before his lunch but he mainly does the disconnecting and bolusing for PE and break and swimming. He and Joe often go out to play now after school. This never really happened much before as Tom would often be hypo during the after school hours and would dread them going too far off. Together though they make a great team. Joe’s levels were brilliant for a long while and have just recently changed and needed more tinkering of his basal. So perhaps he was growing or is growing now. Either way we have been able to make the needed changes and have gotten things back to where they should be.
I am still trying to get enough time with the boys at home to create weekend basal rates to suit them. Tom certainly needs a lot more insulin on a Sunday, no matter what his activity levels on the Saturday. I have a feeling that these pumps give you so many choices that you always have something you could be working on. With this in mind I have begun to keep a Rules Book. I found a lovely address book with the tabs on the side for each letter. In this I am noting any situation or event which has occurred and which might be repeated. To have a ready reference at hand is very useful and much needed when you have two lots of experiences with two boys to remember. For instance, I know that for boiled potatoes Tom needs a 75% basal for 5 hours when I go to bed and needs to do a normal bolus when he eats them. Joe needs to bolus the same but only needs a temp basal for 4 hours or he will be higher when he wakes up. Such detail and such control.
Pumps don’t take the work of Insulin Dependent Diabetes (type 1) away, they just give you a way to react to any given situation. They give you a tool to perfect and a chance to change the basal or the bolus at any time in any day. I still want a cure. i still don’t want to be having to do all this. Oh, and I still want more sensors!
