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!

2 weeks later…

My dad celebrates his 64th birthday today - happy birthday, dad! - and ironically, I feel like I am about 64 today. Being on night duty, day duty and school duty is tiring me out. It needs to be done, however, and it is revolutionising how the boys feel and their blood sugars, so I am not complaining in an ‘I don’t want to do this anymore’ way. Just in a ‘Blimey, this feels like two full-time jobs’ sort of way.

And now to the nitty gritty of all this. What have the boys’ levels been like. I think the only word I could use would be ‘brilliant’. Even though we are still playing with the basal at the moment, I mean we are only two weeks in, Joe has only been up to 15mmol  3 times in the last 7 days. Tom is rarely going above 13mmol, except when he shot up to 22mmol after having the sensor put in (oh, the obvious benefits of adrenaline), and even then is able to correct his levels so quickly and easily it is never for more than an hour at the most. Tom’s eating has so much more freedom, as do we all as a family. We tested it all so much at the weekend, challenging the pumps to cope with chips on the beach from the local chippy, sweeties from the local shop in the afternoon and then a delicious but full of fat Indian takeaway in the evening. And we did cope. Their levels were what we expected they would be. On their average BGs on their monitors Tom’s is 8.3mmol and Joe’s 9.2mmol. Not bad at all.

I am astonished by the sensors. I suspect they may be more of a feature for the children than I thought. It is utterly unbelievable to be able to check their progress without doing so many blood tests. We have had to do about 9 tests a day per child for the last year or so, to get anywhere near safe control. Yesterday, I twice looked at Tom’s sensor to see what he was on when I would otherwise have needed him to do a bm. The sensors come into their own when you have a crisis looming and don’t know what to do. And thereby hangs a tale…

Last night I made a big basmatti rice blunder. I didn’t do a bad carb count or anything like that. No, I failed to cook it properly. To be fair, Olly is usually the basmatti rice cooker in our house. I am the chilli with US long grain cooker. But I pushed the boat out last night and decided to do beany omlette with chilli tomato sauce and basmatti rice. This is a really nice combo, if your wondering. It was the meal I ate before I went into hospital to give birth to Joe - I think the hot chilli sauce had something to do with my going into labour, actually. But back to the basmatti… I basically over-cooked it and made it all sticky and clumpy instead of fluffy and individual. This had a dramatic effect on the boys levels. Maybe it was all down to the rice, but it may be not, I’m not sure until I repeat another basmatti meal and see if the same things happen when its cooked as it usually is when Olly does it.

Either way, both boys stayed down in the low 4’s and upper 3’s throughout the evening. They had a supper and bolused for it using the wizard and the lower level, but this wasn’t enough to hold them. In the end I had to give both of them hypo treatment. I also reduced their basal for an hour by 75%. This did do the trick, but it also meant Tom had to be corrected at 3am as he was on 12.3mmol. Joe stayed lower most of the night but had gone up to 12mmol by morning. Boo hiss!

One thing I am finding now though is that the boys are both having their insulin pulled back even further.   Hitting the right levels for most of the time is showing that they need less insulin to work its magic. Tom has gone down to about 13units per day, with 39% as basal and Joe to about 27units per day, and on about 40% basal. Joe was having a 1:15 ratio for dinner, higher than lunch and most other times  1:18, except breakfast at 1:12. I am just about to put it back to 1:18 now as he is dropping lower before bed. Tonight both boys wanted a snack before they went to sleep, whilst I read them Harry Potter. I let them both get an apple. Tom bolused for it at 10g cho, but Joe forgot to bolus for his… naughty! However, he is only on 9mmol now at 11pm. So that 10g cho hasn’t done that much damage. I am hoping the ratio change will mean this wont be happening again - I would prefer to have it right so that the apple missed makes him high.

Joe’s sensor is due to run out tomorrow again. I don’t know if I should even try for another New Sensor attempt. Maybe that would be too much for him without moving its site. He’s had to have three sets in a row on one buttock as it is. I’ll have to find a better place to put the sensor so we can move the sites around a bit. Although I suppose if he has another sensor in it will go on the other side and this one will get more sets, so they’ll balance out eventually.

 I still haven’t managed to get the pumps downloaded. I have got the lead plugged in and even managed to get to some settings. But the actual down load has eluded me. This may be in direct correspondence with the fact Olly has been out for the past three nights with his students performing their experimental stand-up comedy shows. Funnily enough, as an experiment he asked Joe and Tom to write his scripts. I might post some of the excerpts on here as an attempt at comedic relief. Either that or the graphs, whichever I get to first.

Too tired to think, so off to drink a cup of decaff tea and see if Newsnight isn’t just too lively to wake me up until Olly gets back. Yawn.   

Do sensors make sense?

We had decided when going onto insulin that we would put the boys onto sensors this weekend, a week and a half into getting them settled into the new regime. Tom has been feeling very wobbly about having them. He has had one before, but he hasn’t had one that looks like this with the little white transmitter, so it feels different to him. He still gets wobbly when he has had his set changed; something which is psychological I am sure, as even he said it didn’t hurt at all last time.

So the idea was that Joe would get his sensor on the Friday and Tom would follow suit on the Sunday. I have to say, so far it has been a roaring success. Well, from our perspective anyway. Joe has found it a bit frustrating but I think this is due to his expectations of what the sensor would do for him. In his eyes, I think he thought the sensor would take away some of the burden. He thought it would let him know when he was low and when he was high so he could forget about it all for a while. I think he wants it to let him be normal. That’s one of the difficult things about insulin dependent diabetes. Often you are told that it shouldn’t hold you back, and you should do whatever you want to do. Yet it does hold you back in as much as it changes the way you can tackle anything you want to do.

We had chips on the beach for lunch yesterday. We reckoned we would do the difficult eating all on Saturday so we can aim for really good levels for the rest of the week so we can catch up on some sleep. Chips for lunch would always mean highs for Joe and Tom. So test number 1! They had at a rough guess 125grams of chips, which we have now begun to count at 30% carb to tackle the fat later. We did the bolus on a dual wave, 50/50 and hey presto brilliant levels for them both! Strike 1!

Saturday is also our sweetie day. That means Joe and Tom get to choose some sweets between lunch and dinner. Annoyingly they have had loads of chocolate recently (bloomin’ Easter) so I did feel quite so charitable on Sweetie day as I usually do. However, they chose chocolate (Tom a Thornton’s Fudge bar thing, and Joe a Lion Bar, and both a Kinder Egg which has become tradition for some unknown reason) and took it home to eat whilst watching an episode of Dr Who together. We used a normal bolus, which was just fine for Joe - stayed on about 7mmol - but not for Tom - who rocketed up to 16mmol 2 hours later. I have to presume the Thorntons was more fatty, its not a big bar but it has whipped gooey fudge stuff in the middle,  and that next time we should also use a dual wave for this. Lion bars are probably more sugar with the nuts and fruit and bits of crunchy rice stuff. I paint a picture with words, do I not?

And then to the greasy Indian take-away. We ate late so I had already corrected Tom’s 16.1 back down to 8.8mmol before we ate. Joe was on 5.6mmol before dinner. I weighed the rice, guessed the naan (a quater portion) at 15g cho, and gave each sauce 5g cho for Tom but with a 10g cho for the dahl for Joe as he eats more of it. Dual wave over 2 hours and 50/50 as before. By 11pm Joe was on 9.1mmol (not bad) and Tom was on 7mmol (even better), and by 2.30 am Tom was on 11.7mmol (wow, nothing like the usual highs this would bring) and Joe 10.8mmol. So, give or take a little dodgy carb counting maybe, that was a pretty brilliant result.

I have not been correcting over night recently as wanting to see what the basals did without it. However, I am going to suggest to Olly that we now begin to use the bolus wizard to correct overnight if they are over 7mmol. The basals certainly don’t drop them until they hit the morning hike at 7am - which is there to help with the breakfast spike - though we may have to rethink them a little as they do mean lie-ins are a bit dodgy. I have to say though, I am getting more and more happy with the boys levels. Joe’s averages on his BM kit are the same as they used to be on MDI but without the really big highs and the really low hypos. Even if their HbA1cs stay the same after this switch, they are safer and have more freedom.

But now to the sensor. When Joe is in the right range, and not going up or down the sensor seems to be inside 1mmol correct. That is pretty brilliant. However, when he is dropping quickly or rising quickly the sensor moves outside of the actual reading by about 3mmol. I know this is because of the time lag. In these cases it is the trend arrow which becomes very useful, next to the number on the screen. This shows me that Joe is on 9mmol but that he is still going up sharply. What I haven’t yet managed to work out is what I do about this. If Joe is dropping sharply but not yet hypo that’s pretty straight forward, I know he needs a small, say 5g cho, snack. But if going up I am not yet sure if I should correct or change the basal or what.

I corrected Joe yesterday morning when his pump showed 12.5 with double arrows going up. He tested and was on 15mmol. We corrected the 15mmol, but then he was hypo a few hours later -midway through the chips actually so hurrah for the dual wave - down to 2.9mmol. So this was a spike and I shouldn’t have corrected it. That means I have learnt that we may need to do something different with Joe’s morning insulin still, maybe putting more into the bolus and pulling back the basal (as Angie described in her fascinating comment).

So , in this way I am coming to think of the sensor as an adviser for tomorrows highs, and a guard for today’s lows. It isn’t a little angel on the shoulder saying what you need to do here and now. That’s what we would all want them to be though, isn’t it? Its almost like its actually a statistician, a sort of bank manager, watching the numbers and tutting when they seem to be in the red or when you haven’t transferred funds to your savings account. It’ll have to be a bit more useful than that before I’d want to spend all my time with it. But I don’t mind having a visit for a review every now and then. Does that make sense?

But, I haven’t seen the down loaded information yet. That’s homework for today. So I may change my tune entirely when I see what that shows.

Huge Mistake!

What was supposed to be our first night of proper sleep, only waking once at 3am to check on Joe and Tom’s levels, became a bit of a nightmare last night. Olly was doing the 3am check. At 3.15am he came into the room and said ‘Ive done something really stupid!’ He explained that he had found Joe was on 15.3mmol and so had corrected him. He had taken 15.3 and divided it by 4 (Joe’s sensitivity factor or his correction factor, meaning that 1 unit of insulin will drop his blood sugars by 4mmol) giving him 3.8 units for a correction. He had duly programmed this into Joe’s pump and then gotten on with Tom’s BM. Tom was on 13.4mmol.

Whilst trying to work out whether or not to give Tom a correction, and if so how much it would be, he heard Joe’s pump beep to show it had finished giving the bolus. It was at this point that he thought about the number he had just put into the pump. It occurred to his sluggish brain that this was quite a large amount of insulin. And then it dawned on him.

He had just given Joe a correction of insulin that would take his blood sugars down to 0mmol! Down to nought, nothing, zero!

What normally happens with the maths is you take the BM you are on, in this case 15.3, and you minus from it the target blood glucose, for us at the moment 10mmol. 15.3-10= 5.3 You then divide the number left with the correction factor 5.3/4=1.3 which is the amount of insulin Joe should have been given. So he was given 3.8 units when he should have had 1.3 units.

 Thank God for carb counting! Joe had had an over-dose of 3.8-1.3=2.5 units. We know that Joe needs 1 unit of insulin to cover 18grams of carbohydrate most of the day. So for this over-dose he would need to have 2.5×18=45 grams of carbohydrate.

So at 3.30am this morning you would have found Joe sitting up in our bed eating a bowl of honey-nut shredded wheat with cold semi-skimmed milk, me sitting next to him checking and rechecking the numbers and Olly beside him on the bed reading the opening chapter of War of the Worlds, whilst feeling like someone had slid a knife into his stomach. Joe came down to 14.3mmol an hour later, and then stayed about the same though going up slightly by morning to wake on 16mmol. I was happy with 16mmol given that he could have not woken up at all had Olly not realised his mistake.

And that’s what you forget at your peril. Insulin is not a cure for type 1 diabetes. It is a medication, and its a scary and imprecise medication at that. We families who take home children who the night before were ‘normal’ but feeling unwell and have now become the prey to a life-threatening, life-long condition walk this fine line every day. I know we aren’t the only ones doing this. I know lots of kids and adults have difficult lives, whether from disease or hunger or the risks of war. But that doesn’t take away the horror of doing something wrong to your child by your own hand and seeing how close to the edge that line can be.

Olly has looked grey all morning. He is so angry with himself and worried that he cannot look after his sons’ properly. This one moment is sharp and stinging, whilst the thousands of nights of testing and days of adjustments and trying your best to keep everything balanced are blurred and silken. They slip out of your hands. I suppose that is the lot of the parent, and perhaps the mechanism which will never let this happen again.

At least we have been able to explain to the boys that making mistakes is going to happen. We are not perfect. If they make a mistake no one will be cross. Instead we will know the maths to set it right. That is a valuable lesson for them. They will have far more chance of getting it wrong in the coming years, but hopefully we will be able to teach them how to put it right.

More fun!

I feel like we have been sent to the top of the class. We have passed go and collected our £200. No, we haven’t had a full nights sleep - don’t be silly! We have in fact done our first dual wave bolus for dinner!

 It’s this sort of flexibility which makes the pumps so brilliant. We have been having problems with the fact most of our food is low GI and wholegrain. We make our own bread and are veggie (though we eat fish, so rather are ‘fishy’) so have lots of fruit and veg on the menu along with pulses and fresh sauces (and lots of bloody Easter choc which I will throw in the bin soon if it doesn’t get eaten!) Both of the lads have their highest basal rates just after dinner to try and help this. But the dual wave allows you to bolus part of the meal with a shot of there and then insulin, whilst gently trickling out a proportion of the bolus later over a couple of hours and thus boosting the basal rate further. This has the knock on effect of countering the slower release food and has given Joe his best night’s levels yet.

It is hard to keep perspective on what we have achieved already. We have had the boys with insulin in their pumps for only just a week and two days. And yet the highest level the boys have had between them in the last two days has been 14mmol. When you have been used to having blood sugars which range from 20mmol to 2mmol, with seemingly little rhyme or reason, such control so soon into using the pumps is unbelievable. I didn’t see it though, through my sleepless eyes. Becky pointed it out to me - patiently as ever - and pointed out that this is with the dratted chocolate still involved. That outside perspective really helps.

Being back to school has made some radical changes for both boys. Tom has had his basals changed quite a bit. At 7am he is having 0.45U/ hour to cover the huge breakfast he likes and which usually makes him zoom right out of range. However, at 10am he has his basal lowered to 0.10U/hr. This means that he has less than a units worth of basal for the afternoon through until 6pm ready for dinner. Is there any wonder that Tom would hypo so much during the week. He had to have more levemir to try and help the breakfast spike, but needs so very little afterward that we were not able to reduce.

He has had hypos to show us that this is his needed pattern. But he is feeling them mainly when he is in the 3’s rather than the low 2’s as he was before. So he is safer in the margins of tighter control. Also, he has put on 3 lbs since going onto the pump! He has been having chocolate of course, but I think this is because he is mainly keeping the energy from what he is eating, rather than losing so much through the renal threshold being breached. There is so much less rushing to the toilet for him all day. His teachers have noticed that he is at his desk more in the day, and able to concentrate and not be as emotional as he has been wont to be.

Interestingly, Joe is still finding the idea of having freedom around food very difficult to embrace. He doesn’t snack between his meals unless I ask if he wants to. It is like he has no conversations with his own stomach. I am always listening to mine - do I want a cup of coffee? should I just finish that Chelsea bun? - but he has blanked his for so long he doesn’t know how to tune into it again. I’m not pushing him at the moment. It does mean he is actually eating less than his younger brother right now. Tom is away after this two week Whitsun break, on a residential with school (which Olly is going on), so maybe that will be the time when I can let Joe lead us in our eating with his appetite. He may just need some space, and me waiting for him to tell me he is hungry before I put out food for him etc. At least we’ll get some time to concentrate just on him for a change.

I have now used temporary basals, a dual wave bolus, and just love the maths of the bolus wizard. It’s only the sensors to go for now. Joe is ready for his first sensor which he will have put in tonight. Tom has said he will have his on Sunday (an arbitrary date but what the hey?) with the added persuasion of an extra pokemon toy for doing it. This will hopefully let them give their fingers a bit of a rest whilst telling us so much more about the foods and the exercise patterns in their typical week at school and home. Exciting!

Glass of red wine and a call from the team = happy!

I am sure you all enjoyed the list of numbers and the moaning I posted earlier. Sorry about that. I felt very tired and rather despondent. Some Quorn sausage, a glass of red wine and a call from the team at UCLH have revived me and I am human once again!

There is something magical about having a call asking how you are and sympathising with all your woes. Of course I have done this with friends and family, but getting it from the medical team who excitedly trained you to use the pumps is more than the sum of all these parts. They don’t have to be spot on in helping make the changes you need to get things under some more control - which they are so far to be honest - because it is actually just the fact that they ask which helps most.

So, we have a few more changes to try tonight and I am hoping that Olly doesn’t have too bad a night. When he is feeling pulled too thin I find my ability to cope diminishes massively. I have allowed myself to get a little more tired than I should because I just hate to see him stressed out by all this and work etc etc etc

Anyway, he is back on form and I am bowing out for the night. I am dousing myself with a really lovely red wine. (I am not a wine enthusiast and usually grab whatever Threshers have three for two; so I won’t go into ‘barrows full of ugly fruit’ raptures!)

 Oh dear. Spoke too soon. Tom has blood in his cannula so am off to see if we need to do a set change… oh the joys!

Back to school - for me, too!

Whilst we have been at home, hunkered down and trying to get to grips with the pumps and the new way of infusing insulin, Tom’s teacher took paternity leave having become a first time father. This is lovely news, of course. He has been very supportive and caring about Tom all this year, and I am sure will make a lovely dad. However, this meant that today, Tom and Joe’s first day back to school with insulin in the pumps, Tom had a supply teacher in the class. Oh, and he had PE first thing just to make life even more complicated.

 There was no way I could leave him at school with a supply teacher, with the school new to pumps, Tom new to pumps and the supply teacher new to diabetes in general. So, I became an honorary class room assistant for the day. The head had to clear this with the supply teacher - who turned out to be a very nice woman as it happens - and if she had refused I suspect I would have had to keep Tom at home. It just wouldn’t have felt safe to leave him to cope on his own all day.

Blood sugars before PE were 18mmol! Oh joy, first dilemma then; lesson about to start gave Tom a 0.5U correction even though he had had a much higher bolus ratio with breakfast so was sure he would drop. Disconnected pump and went with him to PE. Lots of running and tumbling later, reconnected pump and did blood glucose to see if he would need the missing basal from being off the pump for over 50 minutes. Tom on 10.2mmol. Decided to leave him as he was and see what happened later. A very happy Tom went out to play with a nutrigrain bar, for which he bolused using his bolus wizard without giving it a BG reading. A very tired me sank into comfy seat and drank from funny toddler-style ’safety’ cup - they didn’t have them in my teaching day; we just used mugs (its amazing I never managed to scald someone!).

It was maths after break, not my forte to be honest but I can manage Year 4 level. Before lunch Tom was on 9.8mmol. He chose what he wanted to eat whilst I helped the key worker who is to supervise his pump at lunch time add up the carbs with him and programme then into the bolus wizard with the BG level. This means Tom is bolusing for his lunch whilst in the classroom and then has to walk over to the hall to eat. I explained how he cannot be kept waiting for more than ten mins at most, and then began to imagine all the things that can go wrong with this system. Must think some more about that one.

 Joe then came down from his class to show me his levels and choose what he was going to eat. I am adamant that he be allowed to do this for himself pretty quickly, but for the first few days we have to be sure he knows what he is doing at school. He had tested in the class before coming down to us, and had been on 4mmol. By the time he got to Tom’s room he was feeling properly low and had his 15g cho Jelly Beans. This then meant we had to wait for 15 mins in the cloakroom. Joe was missing playtime and so was the key worker. He came back up to 4.7mmol and took himself off to lunch. He had been at 12.8mmol at 10am so something is not working in his morning regime. I don’t think the bolus going up is going to stop the spikes. I think we have to do it with the basal and pull back the bolus so he doesn’t drop lower later.

Joe then was on 14.5 at home time - he forgot to do an afternoon Bm - and gave himself a correction dose. Tom had been on 10.1 at the 2pm test but dropped to 4.9mmol by 3.15pm. He treated himself for a hypo before he came out to me and then was on 6.6mmol by the time we got home. They both enjoyed choosing their smoothies from the firdge as a snack on getting home. It is certainly giving the freedom to eat and Tom’s main observation about today being back at school was the fact he only went to the toilet once. He usually goes so often he loses count. Joe was most pleased at the speed bolusing gives you to get to your food; none of the air-shot, insulin into leg, pack it away and then eat business he usually puts up with.

I am glad to have gotten the first day back out fo the way. Joe has his first PE lesson tomorrow which I feel a bit more prepared for and will go and watch to try and work out levels of activity and whether he should take off his pump. Tom will undoubtedly have another supply teacher, so I suspect I will be in school again for most of the time. Hopefully though we will get to make out the different patterns they will need for weekdays.

I have to go and get some coffee to trick myself mentally into staying awake (I only drink de-caff). I had quite a few wake-ups last night. No sooner had one child been high, had a correction and waited an hour to come down, then the other was high and I had to do the whole thing over again. I actually ignored part of the protocol last night, feeling sure Joe would come down and didn’t need a set change. It took two hours rather than one, but he did come down. The basals are just not right for the early part of the night yet. I have a feeling both children will need their largest amount of basal between 7pm and midnight.

I feel a large glass of red wine coming on as Olly is on duty tonight.

Olly is having a LIE-IN. This is my Easter miracle!

Olly is one of those intolerably thin people who do everything with lots and lots of energy. He eats energetically; he relaxes energetically. So he usually finds lying in bed and staying still so as to fall asleep incredibly difficult. Some nights he will lie there, utterly still, without moving a muscle even though I can tell he is wide awake, simply waiting for sleep to come as if it rewards patience. No such luck.

Full nights of insomnia are rare for Olly, but hard for me to comprehend as I am from a family of easy sleepers. My dad, who was a fireman for many years, perfected the art of catching forty winks whenever he needed them, even when I was a young child and he was in his early thirties. If we had been driving to visit family - setting out incredibly early to make the most of the day on the pre-proper roads into North Wales - Dad would stop at a particular park en route. We kids would spill from the car and run for the ‘witches hat’ or dangerously tall, giraffe-thin slide; mum would go to the not-so-filthy public loos and change which ever sibling was a baby at the time, and dad would recline his drivers seat and be snoring - and I mean full-throated, deep-chested, rumbling male snores - before we had gotten onto the grass.

So it is a particular irony that Olly, he of our pairing who finds it hardest to sleep in the first place, should also be the one who finds broken nights and losing sleep so very difficult to deal with. Having a long, bank holiday weekend at this point in the pump start has been of great value to us therefore. I haven’t had to try and pressure Olly to take the time off work when his busy timetable just won’t allow it. We’ve all had the luxury of staying in our pyjamas for late mornings instead of having to rush up and out of the house. And we haven’t had to go to bed outrageously early to cope with the night time testing, so still having adult down time together when the kids have first gone to bed.

But I cannot tell you how amazed I was when, this morning, after what can only be described as a particularly difficult night, Olly said he was going to stay in bed for a bit. Lying in only works if you find lying still and sleeping relaxing. Olly may well be lying in bed and reading - I haven’t checked - but he never volunteers to stay in bed when the sun is up and his eyes have opened. He must be completely shattered. I didn’t even suggest it, he did!

I am pretty sure our problems last night stemmed from the fact we have got this bank holiday weekend because it is Easter. So pump start and bank holiday good, from a sleep point of view. But pump start and Easter not so good, from a sleep point of view!

In many ways yesterday was about as good as Easters get in our house. The boys were allowed to have chocolate first thing in the morning. They usually have half their breakfast as choc and half of their normal cereal. This is mainly to avoid being sick as they are neither of them used to excessive amounts of fatty sweet stuff. However, they are getting older and we are trying to let them have some more freedom to learn these things for themselves. So Tom portioned himself out 91grams of carbohydrate made up solely of easter egg for his breakfast. He woke on 6.8 mmol but was on 20mmol by 11am! Oh joy! At least with a pump you can give a correction easily!

Before lunch he was back down to 6.9mmol, which is pretty cool. Olly made us a lovely Sunday dinner - veggie nut roast, sweet and white potato mash, roast pots and snips, home-made gravy, with carrots and broccoli on the side - which was as filling as a Christmas Day extravaganza. However, the boys still managed to want chocolate by the end of it. I let them bolus for it separately in the hope it would help hold down any of the sugar and fat, and that they might be rather more realistic with their tummies already chock full. No such luck.

In all Tom had about 130grams of carbohydrate in chocolate alone. Joe wasn’t behind him, having 135grams carbohydrate in chocolate as well. I feel slightly ill even thinking about that, though I may well have matched them if I actually sat down and measured my own intake. Who knows. I only know what they have because I am looking.

Amazing as it may seem this amount of extra food wasn’t too much of a problem for either Joe or Tom’s levels during the day. However, they were allowed a final supper of a little bit of chocolate an hour before they went to bed, and it was this final parting Easter shot that did all the damage. Joe was on 10mmol before our dinner. BY 10pm he was on 11.9mmol - not too bad I hear you say - but by 11pm he was on 16.7mmol. We corrected him down to what should have been 10mmol and settled to wait the obligatory hour to see if the correction had worked. You have to look to see if they have dropped at all since giving the correction. This is the best rule of thumb for using pumps and avoiding complications if the infusion site is not working or something is wrong with the tubing etc. Waiting that hour, checking the level again and comparing to the one before then sets in motion a chain of events you must follow. If the BM is higher than the one before, you have to change the infusion set and give some novorapid by injection.

This is because the pump has only fast acting insulin in it. You don’t have the back up of knowing that there is some other type of insulin - the levemir of lantus - in there as well doing some extra work. If the fast acting insulin isn’t going in properly and doing its work, things can go wrong within hours, allowing the sugars to build up dangerously fast and Diabetic Ketoacidosis to develop if you are not very careful. We’ve seen DKA close up and personal. It nearly killed Tom was he was diagnosed. So a set change if they are still rising after an hour is not too much to ask to avoid so nasty and terrible a complication.

So Joe, who had only had his set changed before dinner, then got another change at 12am. Olly gave him 2 units of novorapid by injection whilst I did the reservoir and hooked the system up again. Then Joe did his own insertion by his own insistence. Half an hour later he was on 15.3mmol having been at 17.9mmol. By 2.30am he was on 9.9mmol, by 4.30am 6.2mmol and at 7am he woke on 5.3mmol. Hurrah. In total that was 4 wake-ups through the night to deal with Joe and his levels, including a period of getting very awake and then finding it very hard to go back to sleep.

Tom was on 14.4 before his dinner. He was on 14.6 by 10pm. This was a dilemma. His numbers had gone up, but there had been eating in between as well so we were in a quandary at this point as to what to do. He then had a correction down to 10mmol at 10pm and was re-tested at 11pm to check if this was falling. He was on 14.4mmol by 11pm, a small drop but a drop nevertheless. However, by 11.30 he had gone up to 16.8mmol. Sigh. We had to deal with Joe first, which took about forty minutes all told, then we -retested Tom ready to do a set change at 12.41am. He had now dropped by 0.4mmol. Another dilemma. We waited a half hour, and tested again at 1.15am. By this time Tom had come down to 11.7mmol. He then went to 9.4mmol by 2.30am, 8.8mmol by 4.30am, 8.4mmol by 5.30am and 7.7mmol when he woke at 7am.

Looking at these numbers you can sort of see how the correction finally caught up with Tom, and it may be that Joe would have had the same had we waited and checked again and again instead of doing the set change. There wasn’t a kink in his set, or any bubbles in the reservoir when we took it out. But we had to follow the protocol. It was only because of the time lapse dealing with one child’s diabetes needs that we saw the drop start in Tom. So, with Tom  we add in an extra 2 wake-ups on top of Joe’s 4.

So , you can see why Olly is having a lie-in. And I am sure you will sympathise when I say I am banning chocolate from today’s diet. Anyway, I’ve eaten all mine…     

Time to slow down!

One of the hardest things about having the pumps is trying to give the kids enough positive changes to know they are on to something good, without upsetting the delicately, if not at all, balanced apple cart.

We have been to the cinema today, to see 10,000 BC (which was pleasantly and surprisingly, given the lack lustre reviews, entertaining) a treat the boys picked out when they saw the preview a few weeks ago. One of the things they have always hated most about going to the cinema is having to walk past all the piles of popcorn, the multi-coloured chemical liquids that pass for ‘drinks’ and the stuff I can only refer to as devil’s ice, which once made Joe go off the monitor and cry with the highness of it when a friends mum got him some, nasty, scary, what is it doing to me, slush!

So on this visit they were very excited about being able to choose something to eat without having to go through pulling up trouser legs etc etc whilst everyone files past into the auditorium. Joe chose Butterkist (yikes) and Tom a bag of M&M Peanuts. Why is it that these cinema packs of treats have to be enough to feed an entire family. Can’t they just put out the single person packs. They could still charge us fifty times its actual value, but I wouldn’t have to explain that the few bits of popcorn at the bottom of a gigantic box is actually about a single portion size. No matter how much you tip out of one of these bags it seems stingy. But the actual bag is about the carb value of three pizzas!

So a guesstimate later and two glum ‘come on mum give us more than that’ faces, they end up bolusing for more carb than their breakfast and lunch combined!

Two hours later, sitting in the dark and obviously not being very active or energetic all afternoon, Tom is on 18.2mmol and Joe is on 21.2mmol. Sigh. Corrections given, quick climb up a big hill in Canterbury Dane John Gardens, where they used to put the gibbet high up so everyone could see the criminals swing, and several matches of tennis on the Wii, and they are back in range.

But its the fact that nothing is simple and working. I want the pumps to be easy and this period of time where it is all being adjusted just isn’t easy. Don’t expect everything to fall simply into place. It is taking lots of time to get the basals right - though Tom’s are spot on for normal amounts of activity at the mo - and I have to keep reminding myself to keep it simple.

So tomorrow will be a simple day for us all. Just in time for Easter, and all that chocolate.