Sports Day!

I have to admit to starting today quite badly. I think this was all my fault, but I think as well that what happened goes to show the unbearable pressure which caring for children with a long term condition can bring to a family. I started the day with head-lice and sensors, not necessarily in that order. I put a sensor in for Joe because he has been having a regular hypo over the last couple of weeks. This has happened since we have begun to concentrate on ridding him of the ‘post-breakfast spike’! Perhaps you have heard of this annoying little friend?

Basically both of my kids, and many others I have acquaintance with, need much larger amounts of insulin with their breakfast, or which ever meal breaks the fast of the night. For example, Tom’s lunch time ratio of insulin to carbohydrate is 1 unit insulin to 38 units carbohydrate; his breakfast ratio is 1:16. Joe’s lunch time ratio is 1 unit to 18 grams of carbohydrate; his breakfast is 1:11. There are good biological reasons for this; the emptiness of the stomach leading the food through much faster and getting it into the system quicker than at other times. But whatever the reasons it is the bane of my life at the moment. Tom’s spike, after much fiddling has finally been dealt with. He has a bigger ratio with his breakfast and then has very little basal insulin for most of the rest of the day. I’ve been trying the same thing with Joe, but have had a hypo happen either mid-morning or just before lunch.

Poor Joe! He is very hacked off with this hypo. He doesn’t want the spike either but a hypo just before lunch, which is actually when Joe goes out to play for thirty minutes as he is on second sitting, is certainly cramping his style. So today he got a sensor to help iron this hypo out. I made a change to his bolus ratio having done some clever maths (going from 1:10 to 1:11 meant 0.6 units less insulin over the morning, which should give Joe a spare 2mmol ish as he is on a sensitivity factor of 1:4) rather than his basal (reducing it would only change his morning insulin by 0.1 as he is on so little already over the hour). So basically I had all the bases covered and had moved through a seemingly faultless series of changes to show exactly which change was the one to stop the hypo. I left Joe to go down for breakfast and got down to the (forgive the pun) nitty gritty of Tom’s wonderful headlice outbreak (little b******s!).

BY the time I came down to breakfast with Tom, Joe was on his last few mouthfuls. When I reminded Tom to do his bolus before putting out his breakfast, Joe said ‘Oh…’ in an ominous way. He hadn’t bolused, even though he was about to finish eating. I was instantly fuming and angry. I really had a go at him about hard I was working to get him good levels and how he was only having to do the simplest part of the whole thing and remember to bolus before he ate!

I mauled the subject about for the rest of his time before going to school. I wasn’t shouting angry but he could tell I was riled at the intrusion on my well-laid plans. How awful is that! Fancy telling him that he had the easy bit of this, just having the life-long, life-threatening disease which constantly rules his life and which I could if I chose walk away from at any time. I feel sick at even thinking such a thing never mind vocalising it. But there is no point being guilt ridden. So I said sorry and told him I was cross at the diabetes and even I say stupid things sometimes – stop press, I know that’s hard to believe!

And the rest of the day, having got Joe down form the spike of 21mmol he had because of having the insulin 5 minutes later than he usually does (how mad is that; you wouldn’t believe it unless you saw it, all you ‘I am back at the right level before lunch’ people; who knows where you went in between?), was taken up with the boys being at sports day. I love watching the kids do sports now. I used to so hate it. They are very sensitive to exercise and will plummet at the slightest extra movement in the day. On mixed insulin or even MDI this was very hard to deal with. However, on the pump it has been a new found breeze. Tom had 20grams of his lunch carbs free, without insulin to cover them, and then after he had walked to the sports field for twenty minutes we put on a temporary 50% basal rate. He is only on 0.05 units at this point anyway up until 6pm, so this meant he was only having 0.025units. How amazing is that?! He slurped a little bit of watered down apple juice between races, but no more than 10g cho worth. Amazingly he was on 10.3 before the races began and went to 8.4 by the end of the afternoon. Hallelujah!

Joe wasn’t going to go to sports day, so I thought I only had Tom to manage. He was actually going to an extra maths lesson for kids who need a bit more of a challenge. However, last night he got a bit wobbly lipped and tearful about missing his last sports day. I didn’t know if the school could accommodate his change of plan so easily, so couldn’t pre-plan very much. However, they were brilliantly flexible and, given that I was going to the sports day anyway, didn’t make any fuss. Joe had a sensor in thankfully, so he just kept checking himself. When I caught up with him at the field he was on 7mmol with one arrow down. He had a fruit smoothie, about 17 grams of carb, without any bolus of insulin and then got on with running having had the same 50% basal as Tom. He was on 4.6mmol when he finished the afternoon. Interesting the difference between the free carb at lunch which would have been low GI, and the free carb fruit smoothie which obviously isn’t very low GI. At this point he had a 20g sports drink without bolusing as I knew he needed something extra from the trend arrows down on his pump. He also had a banana and got himself a bowl of baked beans when we got in, both of which he bolused for. He still went low by 6pm, down to 3.1mmol.

We just had a Chinese take-away as a treat and feel pretty stuffed and happy. Even when you start a day badly you can get something good out of it. Joe and I are still good friends and he is nicely forgetting my morning outburst. That’s the great thing about children; they live so much for the moment. I will, though, have to be sure I didn’t do any damage to him and will have a big chat about my outburst. Its hard to know how pent up I can get about the responsibility of all this. I didn’t train as a nurse, and I never would have thought my time would be so spent as an adult. That can make me feel trapped and overwhelmed sometimes. But I never ever regret my children. Just the disease.

Hello world Again – sorry to have been away!

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!