Did I think I was tired before? Now I am tired!

I have now realised why doing two children at the same time on a pump start is somewhat of a challenge. Its this needing to retest business. Whenever you have a higher reading than 14mmol you need to act by giving a correction, and then you have to re-test an hour later. Now that is fine if there is one person to have to set the clock for. What it doesn’t work so well on is when you have to correct one child at 1.30am and so wake at 2.30am to check them and, joy of joys, they are coming down from the high. But then you check the other as well and realise that they are now high, and so have to correct and get up again an hour later.

Then throw into that mix the fact that the one who was high before and had a big drink of water, though now getting lower, starts to need the toilet. So half way through your hour wait you have a wake up and have to get the other child settled back to sleep. And say that happens twice more through the night with each child. (Very tired sigh!)

This is my life at the moment people!

Actually, it is not so bad if you look at it from the right direction. I am learning so much so quickly. I can now see why you don’t use the bolus wizard to bolus for supper when you have had dinner less than an hour and a half before. The bolus wizard cannot believe that you have enough carbs in you to deal with the amount of insulin still on board and so it conservatively cuts down the amount for supper, which results in a very large spike in the night. If you know you have carb counted rightly, you can take over the bolusing job and be in control yourself. I will now not input a BG level when close to another meal when using the bolus wizard. I can use the bolus wizard for corrections - that will be useful - but not for actual food eaten. For that I shall rely upon my somewhat depleting brain powers. You see, that is a great bit of learning which will be very, very useful in days to come. Its a good thing that I found that out now, it really is. 2am is a great time for me to learn. It focuses like nothing else!

And I am now sure we have changed all of Joe’s basals to fit in with his having a drop during the early hours after he had eaten potatoes. I know Joe goes lower in the early hours after eating potatoes, I’ve known this for two years, but I didn’t put two and two together and work out that this would mean he would rise every other night on this basal pattern. So I have learnt two things. 1. Joe needs more basal insulin between midnight and 7am. 2. Joe (and probably Tom) needs a 25% reduction in basal rate between midnight and 7am whenever he eats boiled new potatoes.

Potatoes are wonderful things but I have always had a love/hate relationship with them for this very reason; they have no stable profile for my children no matter how they are cooked unless they are utterly saturated in fat. Animal fat makes them last twice as long as vegetable oil as well, just in case you are interested. So I can always tell when chippies have lied to my veggie family and actually cooked in lard ~ be warned all you chip shop owners. Perhaps now I will begin to love potatoes again, as I have the wonderful tool of those reduced basals

So, I will soon have potatoes and lentil soup covered. Only a few thousand other food stuffs to go. And I haven’t even started on pasta and rice yet… oh the joys! Still, you would have to fight my entire family very ferociously to get these pumps off us, you know. I had to give up sleep before with no hope that I would be able to get things right the next time. Now I have bucket loads of hope and plenty of patience to practice.

Now to find some tips on how to stop the dreaded air bubbles in the reservoir, and which ones to worry about. Joe had them in the reservoir again this morning, though not as many as yesterday when he looked like he had lemonade in there rather than insulin. At what point would anyone change the reservoir I wonder? None in the tubing though, so maybe we should just keep the pump upside down all day?  

Brilliant day, bad day.

Having started the day needing to do a set change for Joe, as his reservoir was full of bubbles and he had had lots of corrections over night, Joe carried on as he had begun. I think my biggest mistake was giving him lentil soup again for lunch… the same thing happened as over night; a huge spike up and lots of correcting to get him down again. And the moral of the story; don’t have lentil soup for lunch after it has made you high after dinner. Oh well. At least I know we need to experiment with this low GI meal so that it doesn’t cause such havoc again. Its Joe’s favourite food and he’ll be very cross if I get funny about him eating it.

I am thinking a square wave bolus - though I would feel like a right know it all to use one on my second day pumping insulin! So, I am popping some of the soup into the freezer and we will use it in a ‘lentil and tomato soup’ experiment in a few weeks time, when I try out different bolus patterns. Fancy a bowl of lentil soup being a difficult food. How ironic that something so healthy can be so problematic.

Tom however, who had scrambled egg on toast for his lunch, has had an amazing day. If we have days where Tom has levels under 9mmol we can usually be pretty sure he will have had hypos at least two or three times in the same day. Well, I hate to tempt fate but he has had a shocking day. On waking 5.6mmol, at breakfast 4.4mmol, mid morning 7.7mmol, before lunch 6.6mmol, after lunch 7.8mmol, 5.30pm 10.1 mmol, pre dinner 7.7mmol!

We have never ever seen stability like this for Tom. It means his Total Daily Insulin has dropped to 12.5 units from around 15 units on MDI, but his control has been so much better. This must be his first normal levels day since he was diagnosed. I can’t tell you how upsetting that is. To think he has had 1 day out of the last 27,000 odd where he would have felt like any other kid. There has been no rushing head long to the loo, no whining and grumpiness and no shaking with hunger and frustration. He sat happily at the kitchen table and did some of the school work he has brought home, and he just kept sitting and writing for ages. He has always been an imaginative little chap, but his work used to explode from him in one blaze of creativity. Today he did a slow burning build up and enjoyed telling me he had finished. Then he did some maths without complaint!

I hope Joe has a good day tomorrow. I must go and get his monkey set up with his pump pack. Joe is such a sweet tempered little chap that you would never know when he was high if you didn’t know him really well. He gets closer to tears over smaller things and finds it very frustrating that he cannot concentrate as well on his work. I could tell he wasn’t himself today at the table. He had to cross out several answers in his science book, and then kept writing out the same wrong answer again. He doesn’t get angry or openly upset. But you can see he is not happy about it all.

We are going to the cinema tomorrow and they are going to be allowed to choose something to eat from the snack section. Usually I take bags of nuts or something they don’t have to bolus for, but not on this occasion. It will be great to see a film that Tom doesn’t have to leave part way through to go to the loo. Olly will appreciate that as well, I am sure. Since the boys have been big enough to know they don’t want to be seen in the girls toilets, he has been the one to have to take them to the loo. Well there have to be some positives for a girl, don’t there?

More fun and games!

Well, I have now had my first session of hands on at home learning!

Joe went high during the night, though he did respond downward with corrections. However, I was pretty sure I hadn’t miscalculated the bolus or carb counting for the lentil soup - and I did take out the bay leaves hurrah - so was thinking maybe about calling UCLH and asking their opinion.

As is often the way, Becky the PDSN called just at that very moment, and we chatted about the basal changes to make for each boy. Tom has still been so steady - wow - and we have adjusted a little over night to hold down any small rises of 2mmol etc and small drops of 2mmol etc that have been happening. Unbelievable when you think I used to have to assume he might drop by 6mmol over night from 2.30am onwards and work out how much to get him to eat to cover this when night testing.

However, with Joe being higher in the night we both concluded we should do a set change and then look at potentially getting him a bit more active today to compare with normal days activity. I am soooo glad we did the set change! Hie reservoir was full of bubbles which would have kept interfering with his levels for the rest of the day and night. I actually enjoyed doing the set change with him, he was looking over my shoulder and telling what I was forgetting to do thankfully, and feel like the routine is sinking in better now. There was no kink in his set so it was the bubbles - nasty little blighters!

I feel that Joe shouldn’t keep his pump on him over night. He gets very hot whilst asleep and I suspect this may be contributing the bubbles forming in the first place. It can’t be about being active as Tom does far more jumping about that Joe and his reservoir looks pretty clear of them - touch wood! So tonight, Joe’s cuddly monkey is going to wear the pump pack for him and hopefully he won’t get so hot!

I then checked Tom’s tubing and low and behold saw two pretty big bubbles in there. My first fixed prime to get them out - obviously having taken the cannula off Tom’s site. I watched the bubbles progress but the boys just wandered off to keep building Bionicles. I am now going to set up a set time each day, maybe when cleaning teeth, to check tubing for bubbles and have a peak at the reservoir. I have already thought about checking bolus history when at school to be sure they are remembering to do the bolus at the right time, but this more mechanical check has only occurred to me whilst on insulin in the pump.

So, feeling like I have started learning for myself now outside of books and on-line demos. Still so impressed and pleased with the pumps. Hope I am managing to get across the brilliance whilst letting you hear me moan?

Cooking and dreaming don’t go together.

I have a huge pot of lentil and tomato soup on the stove and I am trying not to rest my arms on the lid as it simmers and let myself drift off to sleep. I have to remember I have put three bay leaves in there - or we will be having a very grainy dinner.

Joe hasn’t felt 100% today. He did have a cold over the weekend and I think it might be a sort of low-grade bug. He’s sitting in bed playing with the Nintendo DS. He has assured me he will want a large amount of soup (his favourite) but that his head feels a bit spinny whenever he gets up. He isn’t low. He hasn’t had any hypos today. We’ve been doing the two hourly BMs all day and he has been pretty stable: 13.2mmol after breakfast with no wait between bolusing and eating; 13.4mmol an hour after that; then 7.8mmol at 1pm before lunch and 11.1mmol at 3pm when he had some sweets and bolused for them; then he has just been on 9.6mmol at 5pm. What I am not seeing is the peaks and troughs he usually has during the day. The dips which you have to keep in the back of your mind are just not happening. I am not having to think ‘How much of this nutrigrain should he bolus for now?’

His basal rates are: midnight - 7am 0.40 U; 7am-11am 0.6 U; 11am-7pm 0.40 U; 7pm-10pm 0.55 U; 10pm-12am 0.50 U. You can see how the hourly rates of the basal are now doing the upping and downing rather than Joe’s blood sugars and his eating of food. The pump allows the insulin to follow what is needed on a usual day instead of trying to feed the insulin for those times when the child will usually go low. It feels like a miracle to me. Quite apt given the time of year!

Whilst we have been changing Joe’s basal today and last night, we haven’t done much with Tom’s yet. He is staying much more stable than he usually does. I always suspected he would be more stable if we could deliver his basal in a flexible way. He, before on Multi Daily Injections, was on 26% of his daily insulin needs coming from the basal insulin injection - the levemir. Usually 40% is recommended for a more stable day. However, if I upped Tom’s levemir dose it would make him hypo throughout the day, even when I pulled back his novorapid doses. I understand that we are waiting to see that his basals are right before making other changes, but it is hard not to use those fantastically small doses you can do on a pump to correct him down to a healthier level. We seem to have hit on the right basals for him and are trying a different ratio for breakfast as he had to have a correction this morning. So its the one thing at a time situation.

I am feeling pretty happy just now. Tom has just come down and said he was hungry. He’s had a little orange and bolused 0.2 units for it. As soon as Olly came through the door he galloped over and asked him to take him out for a walk. We couldn’t stay out for very long today as Joe wasn’t up to the cold wind etc. This is so very unlike Tom, to have this sort of energy at the end of the day. I know others have noticed a return of energy to their kids when they go on the pump. Tom does seem to be fitting that pattern.

Right, time to whazz the soup… having removed the bay leaves of course. How many was it again?

Olly is on night duty tonight. I hear my pillow calling to me and its only 6pm!

Still here, and hopefully talking sense!

Okay. I am back to talking sense.

Joe and Tom slept the whole night through and neither of them dropped too much at all. I had pushed the envelope somewhat, wanting to avoid having rice or pasta as they have both being causing later spikes, and so having potatoes which usually cause us later lows. However, no lows at all over night so that is a result already. I had taken up three bottles of ribena and left them next to my ready bed, but no need for them. I stayed awake until the 1.30am test, Tom, 11.6mmol and Joe, 10mmol and was anticipating them both going higher as the midnight basal kicked in slightly lower than that from 10pm in the evening. However, Tom stayed remarkably stable, being on 10.8mmol at 4.30am (turned off 3.30am alarm and woke with a start an hour later - d’oh!) and then on 9.5mmol by 6.30am.

I suspect I am sounding a bit like new parents who are forever telling you the contents of their children’s nappies, and the amounts or types of food you have managed to get them to eat. I just have a need to get the numbers I am seeing down onto paper in some way. I am afraid it may well be very boring, but it is like I can see their numbers around me as a brief history of their time on a pump so far. I am sure this will wear off - as will my desire to relate how many hours sleep I am getting.

Joe’s levels moved about a little more last night, but avoiding lows was the main aim and it will be interesting to keep the basals the same and see what happens for a whole day today. He had dropped from 10mmol at 1.30am to 8.9mmol at 3.30am and 6.4mmol at 6.30am. I am just about to go and persuade him to do another BM. I have been trying to use different fingers in a rota but this is going to get them fed up soon enough.

Olly did the 6.3oam test, so I did actually sleep from 4.30 until 7.30 without waking up. Hence I am feeling slightly more human now. I know this is not the way all clinics do pump starts - so do not panic if you are thinking of going onto a pump. This may well not happen to you. But if it does, it is like getting a really good look at what the basal rates are doing and what is happening because of the new bolus ratio and sensitivity factor. I honestly don’t mind all this watching. I can feel how much the boys needs are changing already. They both woke up and got straight up and are playing very happily.

Tom’s carb ratio, which has been changed to 1 unit of insulin to 33 grams of carbohydrate means he only had 2 units for his usual gargantuan breakfast. Joe had less than that for his far more modest meal. Now I am waiting to see if we can hold down the breakfast spike. Usually they have a far higher ratio at breakfast than any other meal, so I suspect we will see a large increase this morning. Being able to correct it will be very useful indeed. The ability to put in tiny amounts of insulin to bring the children down to a good level is almost my favourite part of the pump.

In the night I used the pumps to check what levels of basal they were getting each hour as I tested. How brilliant is that. Now when we do a bike ride to Canterbury, Tom can sleep without me having to wake him half the night to eat. I cringe when I think of their poor teeth and all the food they have had to have after brushing them. When they feel sick and don’t want to eat anything at all I can adjust the basal to make sure they don’t go low, and if they are feverish I can up the basals to counter the high blood sugars that come. Its that ability to react when something happens, rather than having to wait 24 hours for the basal injection to be within your sights and trying to work out how much less to give for the whole day and night in advance of what they do.

Ah well, it is a beautiful, hopeful, sunny day and time to get some much needed vitamin D I think.

Still awake!

I am still awake at 12.45am this Wednesday morning. I have managed to force down two mini kitkats and a mini packet of maltesers, with a big mug of decaff coffee. I now feel sick and even more tired!

Apples are supposed to have as much stimulant in them, to help you stay awake, as coffee. I would recommend apples over sickly chocolate and toilet-inducing coffee were you to need keeping awake. That is the sort of learning curve I am on at the moment.

I have tests at 1.30am, 3.30am, 5.30am, and 7.30am to go.

In some ways I wish I had set myself up with lots of my daytime work to do, then I could be engaged usefully whilst waiting to test Joe and Tom. As it is, I am simply idling my time away watching Film 2008 (the last time I watched this Barry Norman was presenting and the year had a 19 in it), and flicking through the on-line clothes shopping sites you should never visit when having a chocolate hang-over. I will resort to answering some of the e-mails asking for other friends and relations contact details soon… now that is desperate. I am not replying to enquiries about myself and my loved-ones, simply redirecting one person to another like a huge ‘hello fruity’ telephone exchange from the 1950’s.

I am now referencing what could only be called ‘take a hammer to the television and hope it hits their face’ rubbish BBC programmes starring failed to show diversity B list celebrities. It is time to go to sleep. I thank you.  

A long but very happy day!

We are all very happy but utterly shattered. That train journey just finishes off what few brain cells are still functioning so I must apologise for my inability to write tonight!

I love my boys on their insulin pumps!

Today they chose what they wanted to eat for their lunch and then bolused for it. I mean, I didn’t give them some food with an amount to bolus and then tell them they had to eat it all. They actually chose what they wanted to eat… though I still insisted on a sandwich and fruit and a drink being involved somewhere. They were both making a huge pile of food in front of them at first. The looks on their faces was amazing when I said ‘Look, you don’t have to shove in everything in this one meal. If you want to save something for a snack later you can. You don’t have to grab it all now. You can have a fig biscuit later, or even a little Kitkat. It doesn’t matter what level you are on, Tom. Joe, if you want the snack you can bolus for it.’ Everyone in the room was really moved by the obvious effort it was taking for them to have a ‘normal’ attitude to eating.

Since going onto his pump at 10.30am this morning, Tom’s been low before his lunch (2.1mmol), went up a little mid-afternoon (13.1mmol) and then stayed stable most of the way home, after having a nutrigrain bar bolused for (which would have been too large a snack normally) and then was on 5.6mmol before his dinner. He is watching Harry Hill on TV, laughing fit to burst, though I just heard him jump up and shout ‘We’ve forgotten our Lev… oh, we don’t have to do it!’ Honestly, that’s what he shouted. I’m feeling quite excited because I am going to go and ask if they want anything else, or if they are full. I’ve never done that before! How sad is it that I am excited about having seconds!

 {They didn’t want anything else. Damn. Mental note ‘Give them less food on their plates so they want more tomorrow’!}

Joe’s levels are a bit more out - which may be that he has more lev still hanging about as his is a higher dose as basal - and he has had a few hypos. He was on 13.9 at 10.15am when the pump started with insulin in it. He went down to 7.9mmol 2 hours later, 5.8mmol half an hour after that and then was on 3.3mmol by 1pm lunch time. By 3pm he was on 15.5, so we had our first excitement of doing a correction on his newly calculated correction factor of 1 unit of insulin bringing him down by 4mmol. He had a correction and was on 10.1mmol an hour later. He bolused for a kitkat before we left the hospital (hurrah) but was on 3mmol on the train at 6pm. He followed the 15g carb and then wait 15 mins, and went up to 5.5mmol. I didn’t want him to eat and bolus for anything else as he was not far from dinner. However, he was on 4.6 at 7.10pm and then at 3mmol again 10 minutes later. So, the afternoon basal isn’t quite right yet.

The insulin is in itself much easier to get into the pump than the saline was. It will remain to be seen whether we can escape the dreaded air bubbles. The saline in Tom’s reservoir got very bubbly and there were bubbles in his tubing when we came to take it off on Monday night. I presume I can just prime them out if I find them in the tubing again. They have plenty of insulin in their 3ml capacity reservoirs. We are going to need all of it on the weekend though, as it’s Easter and the boys have been told by Becky that pumps are very good for eating chocolate!

I am doing the wake ups tonight. They have just eaten at 7.30pm and bolused for their dinner. I will therefore have to test them again at 9.30pm, then 11.30pm, again at 1.30am, then 3.30am, then  5.30am and 7.30am, by which time they will be up and wanting breakfast. If I have to do any corrections during that time they will also have to have BMs an hour after to be sure they are coming down. It is going to be a long night and a long day tomorrow.

On Becky’s advice we are off to find something good for the boys to have in 15g carb amounts for treating lows tomorrow. The Ribena Joe usually uses is too difficult to judge from the bottle, and Tom is finding he has to have a lot of 3g cho glucose tablets to get to 15grams - obviously, 5 which is quite a few and finishes a packet in only two hypos really. The boys are keen to look at having jelly sweets. I am looking at small cans of pop, but neither of the boys really has fizzy drinks so that might not be so useful. However, the idea of looking is enough to have them excited tonight.

They are not going back to school until after the Easter weekend, which will allow me recovery time from the night time waking and will allow them time to get to grips with the new way of thinking about food and the new rules about what they do when high and low. Time is important for them to adjust. There isn’t any rush to be off and out just now. They have some work from school and I love thinking up fun things for them to do. I can also take them out for sessions like PE and watch to see what each does to their sugars. We will go swimming as well. This is like learning all the things they routinely do again. I need to see whether, once we have got the basals right, if disconnecting from the pump is enough after they are active, or if they need to snack or do temporary basals, etc. I know this will take lots of notes, BMs and trial and error. But the reward is huge even now so I won’t mind the effort at all.

Having said that I am shattered. I could happily go to bed right now. I know I am going to be a walking zombie by this time tomorrow evening. I can’t even have coffee to keep me awake as it gives me ectopic heart beats - bummer! I am too tired to even fancy the packet of maltesers on the shelf in the kitchen I bought as a treat for being so tired! I am drinking fizzy water instead! Me - refusing chocolate and accepting fizzy water… this is unheard of!

I’d be worried if I weren’t so tired.

Live insulin tomorrow!

Usually, when I have to make a trip away at the weekends, I take advantage of the time sat on the train to read. I have finished so many half-read and almost abandoned books that way. It is the only thing that can render heart-breaking or anxiety creating visits bearable. So this weekend I thought I was being really good when I took with me Tom’s folder of information about his pump, the sensor booklet, Pride and Prejudice (probably the 20th time of reading but I find it sooo comforting in times of change) and Lark Rise to Candleford (to check if the TV are doing it justice).

This was the hardest leaving of home yet. I know Olly can do everything, and I know the kids will be fine, but it was very difficult to pull myself away. The kids might be finding things emotionally tough, needing more down-time and hugs etc, and this is understandable. But I am finding things tough too. Its like time runs through your fingers, as the extra thoughts crowd in and change every decision you are making. Not only am I making the meals, putting the info into the boys’ spreadsheets, carb counting, putting out label with amount novo needed and adding in corrections etc. but also I am trying to get the kids to compare what the bolus wizard says they need for their bolus for this meal. Asking them to compare two systems, make sure they inject insulin and also bolus on the pump, takes so much more time. Its a conversation each per child per meal. I know that sounds petty and rubbish, but it adds up and elongates everything.

So walking away and leaving Olly to do all this is hard. Maybe I’m a control freak. Its a useful thing to be when you are duty bound by your child’s health to keep control with them of a chronic condition. It makes switching off very challenging.

By the time I got to London, feeling very flustered and fraught for most of the journey as I’d done that ‘denial of going until the last minute and then run out of the door’ routine, I had read Tom’s sensor manual and my head was swimming with extra information. It all seems quite straight-forward on paper, but I am sure it will prove more challenging when it’s plump pink flesh you are trying to fire the device into, and the descriptions of bleeding don’t help I can tell you now!

I got across to Euston with no problems, grabbed some food and scrambled my way onto a very full train. One seat was unbooked in the carriage I found. Only 1 seat for lots and lots of eager passengers. I fought my way to it and refused to take the eye of anyone I had just disappointed. I got out the Medtronic folder and my two novels, hoping to forget the Diabetes for a while and just relax. It was just as I was opening P&P that I heard a beeping pattern which I recognised… if my ears were not deceiving me I had just heard the bolus beeps of a Medtronic 722 sensor pump!

Like Bill Oddie in a bird-filled forest I began to scan the surrounding seats for signs of diabetes. Damn it… you really can’t tell some one has it you know. It is utterly hidden even when looked for by the trained eye. I spotted a teenager glance at my Medtronic folder and a flicker of recognition passed between us. The lady next to her turned and stared piercingly at me. I wondered if she was going to get cross and tell me off for staring at her daughter, but she was really just checking that I wasn’t a mirage.

‘Did I just hear a Medtronic pump?’ I asked. And the flood gates opened.

They were visiting England as part of a Canadian Girl’s Soccer Team (what are the chances of that happening?) and had been using the pump since last May, having had a diagnosis the year before that. I think I shocked them by saying, ‘So early days for diabetes still.’ They were astounded that I had two children with diabetes, and that they had both been diagnosed so young. They were appalled at the idea of having to fight to get to a pump, but amazed at not having to pay for it all ourselves. They are only now benefiting from a new policy which states that teens can also get two thirds off their medical bills on a pump in Canada. So they have to fund all the consumables and sticky tapes, creams etc etc. themselves. They had been using the sensors since day one on the pump and encouraged me to use them if at all possible for both my boys. However, they were astonished to hear how much the sensors cost over here. They paid $22 per sensor and assumed they would be about £14 for us. The fact that they are £37 per sensor was shocking; they expected everything to be on a par across the world. Of course they offered to buy them and ship them out to me. I might look into it.

It was then I noticed that we had been gabbing on for over 1 hour and thirty minutes, and I was about to get off the train. We swapped e-mails speedily and I flung myself and all my books off the train - still unread.

So my whole journey was spent talking the big D! I also spent most of my visit worrying and thinking of things we needed to do before we went to London to get the insulin in the pumps etc. I wrote list upon list all over the paper in my folder. All went well at home, as I knew it would really.

And so home and now to get everything ready to go live with insulin. Tom and Joe have their final day of having injections. I found Tom sitting on his bed in despair this morning. ‘I don’t know where to inject my novo, mum. There isn’t anywhere that isn’t lumpy!’ Sigh. ‘Do them down the outside of your right thigh today. Don’t worry you’ll be able to stop using the needles soon. One more day to go.’ Tom jumping around the bedroom singing!

Time has run out through my fingers again. All those things I felt were essential to do today are waiting but I don’t think they’ll get done. Let’s face it, the only essential is being in London at 10am tomorrow with some vials of insulin, some new infusion sets, a calculator, a reservoir each and two little excited boys! Everything else, my books included, can wait for a while!

Home again - and new Care Plans!

Ignore the mind at your peril!

 It is amazing to see first hand what fear and anxiety of change can do to a little boy. Tom texted me (I know, it’s the novelty and I hope it will wear off but he needed a phone so he can practice keeping in touch with me when Joe is at secondary school and he is at school on his own at clubs etc - sigh) to say he had felt his pump hurting him all day. This was just before he came out from the class. I texted back that we would sort it out and I loved him.

Joe came out first and told me that his track suit bottoms for PE had pulled on his cannula but other than that he hadn’t felt his site hurt at all. And then out trundled Tom, almost limping and grimacing with every step. He looked sad and in pain. Yet, when I mentioned he had forgotten his music folder he ran back inside to get it with a jump in his step, still having that antelope prancing appearance that younger kids usually have. By the time we got to the shops on our High Street, and I let him go birthday list shopping in Woolworths, he told me his set felt just fine.

Yes they both went low on the way home because they had done a mile ‘run’ instead of a mile ‘walk’ as I had thought it was meant to be. And yes Tom had managed to either do a bolus at 2.30pm for seemingly no reason at all, or the lock hadn’t been put back on and he had managed to press buttons accidentally whilst at his desk. But when we got home Tom was able to squat up and down, do a few karate kicks, bend right and left, and sit cross legged on the wooden floor to watch TV, all without his cannula hurting him at all.

The only difference I can see is that he feels safer at home. He didn’t gain anything from feeling sore at school. He still did his run, his maths and the assembly hall etc. Its not like he was ‘trying it on’ or anything of that kind. It is just that he feels very worried about things being all right when he is away from home.

So, that’s the next big task. To get Tom to feel safe at school, to trust that he is all right and that he doesn’t need to be hurting for people to be interested in how he feels. Having the teacher from the Welfare Team will be, I’m sure you would agree, utterly invaluable in this respect. So, they need some time to build up a relationship.

I am going to try and look into having funding forthcoming for that caring time for Tom to be ear-marked at that point in each day. The Care Plan that UCLH have given us for use with the school is great. I have always written my own before. I need to ask if I can bring in an element about Tom’s emotional well-being, and whether the clinic would also recognise that as an important element in Tom’s change to pump therapy. It would be wonderful to have the times needed for Tom at his lunch for bolusing also safe-guarded.

Joe doesn’t need quite the same attention. The technology of the pump is right up his street, and he can merrily bolus and check his corrections etc etc without anyone looking over his shoulder. His confidence has grown so much too. I was told today, having warned his teacher to ask pupils not to ask Joe any questions about his pump but rather to address them to me, that Joe was giving a demo to his close friends and a few teachers this lunch time. That is utterly unheard of for Joe. It is such a great step forward, and one which I so hope the move to High School won’t put pay to.

I am in school for a meeting with the boys’ teachers tomorrow morning. I am going to have to write a list of the things I need to remember. Why is it good schools who support their children, who don’t make a fuss and get on with it, don’t get any extra status or financial support for doing so well. Isn’t anyone watching all this? Don’t they see the bad, unhelpful ‘they need to be independent and look after themselves’ schools?

Joe is going to school as Leigh Scoresby and Tom as Skullduggery Pleasant tomorrow as it is their Book Week. Joe is always taken by the modest, righteous hero character, the Beowolf of every story that many kids might miss. Tom always styles himself as the super-hero, someone far beyond mortal harm, not party to the usual physical shocks and breaks. His heroes are ever-lasting and ever-safe. Telling, isn’t it?

Back To School.

I had to sign the late book for Joe and Tom this morning. They were both really cross about it, and I wish I had phoned ahead and said we would be coming in after the bell but not to make the boys come to the office with the other stragglers. We have never signed the late book before. They hate the thought that they have done anything wrong, and this lateness was all because of the pumps.

Having had the day off yesterday, I was all ready and thought I’d got it all under control for them going back to school today. Bearing in mind that they are still only pumping saline, I thought it would be just the same routine with a tiny little bit of extra time needed to reassure them of what to do about the pumps. Wrong!

Firstly, they both needed a shower. Normally I’d leave them to get on with this themselves but today they needed me to stick around and offer some extra support. They disconnected their pumps and left them on a towel on top of the drawers. Neither spent very long in the shower, and they were both worried the water would make the set come off. They stayed in long enough to shampoo and rinse and then got out - very environmentally friendly this morning. They towelled dry, were both pleased to see the set was as sticky as ever, and then tried to reattach their pumps. Tom managed his, batting my hand out of the way impatiently, and then went through to get on his uniform. Joe, however, found it harder to get the infusion set re-attached to the cannula. You have to put a small ring of plastic back onto its central axle, and then turn it to a point matching a little line so that the tubing is in the right place and reconnected to deliver the saline/insulin. 

I could see Joe was struggling but he finally said it was on. It was only a few seconds after that the site began to hurt. Sharp, needle pains were running up and down his leg when he began to get dressed and he was obviously beginning to be distressed. I tried the ‘give it ten minutes’ treatment, and Joe went down to breakfast wincing and limping. He put a good face on it whilst eating, but was obviously in discomfort after. We went back upstairs and he let me take the set off the cannula again. There wasn’t anything to see which would explain it being painful. I tried to reattach it and wondered if it had been twisted about with the earlier attempts Joe had made. I couldn’t get it to go back on at all - oops. Joe was feeling quite cross by now, stood up and took it off me, put it on himself and said it had now stopped hurting.

He bolused a tiny amount of saline to be sure it was attached and seemed to be fine from then on. Not sure if the set hadn’t been on slightly right and might have been pulling against the site. The bits of plastic are very fiddly. I felt like I had really huge fingers, like having to press buttons on a tiny phone when you are in a dream and really need to dial the right number, and couldn’t maneuver the ring at all as it needed to be. I think I’ll keep one of the boys sets tomorrow when we do a change so I can practice.

So I’ve just got Joe feeling okay, when Tom starts to whimper saying he can’t lift his leg up in his school trousers because it is making his set hurt!

Sure enough he really cannot kneel down and put on his shoes without wincing. I try to readjust his waistband, and this helps a little, but I actually think its the trousers themselves which are probably a size too small round the backside though the right length in the leg. No more getting away with size 7-8 when he’s nearly 9 then!

Then half way to school Tom starts sobbing.

He has a bag which goes over one shoulder and across his back with the strap across his front. The bag has been banging against his cannula and it is really hurting now. We have to stop and wait for him to feel better, having a big hug and lots of reassurance, and then I hold his bag all the way to school and try to take his mind off it all by asking about his piano lesson later in the day. He’s fine by the time we get to school - but then of course we are faced by the late book, and the looks on their faces say it all.

I have to point out that so far the day has only had 1 hour and fifty minutes of us all awake! How can we possibly have had so much go wrong in so short a time?

And we haven’t even got insulin in the pumps yet…