# We are Struggling...



## hkk1970 (Apr 29, 2013)

hi, my little boy who is 4 has been on the pump now for just over 3 months. 

We have had many downs during this period and things seem to have come to a head. Last night he flatly refused to have his cannula put in . Not just refusing but crying and screaming, curling up in a ball . As a mum I find this horrendous and ended up in tears myself. I called our emergency pump line, and the nurse advised me to give him a cuddle then basically told us to hold him down between me and my husband and force the cannula in. After almost 1 hour 30 minutes we got it in.  We never had any problems on injections but this pump seems to be a nightmare.

We just get him right then his levels shoot up high then we alter the basal then we go to low.

regarding a previous post on checking children in the night. I constantly check him , every 2 hours and am often awake for hours on end wondering where his levels will go.

I am sorry to rant but i would like some re-assurance that things will improve for us. This is starting to affect us a family, I also have a 6 year old boy who is amazing putting up with the daily saga of harry and his diabetes.

Thanks for reading.... Helen


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## Northerner (Apr 29, 2013)

Oh Helen, I am sorry to hear this  I can't offer any advice, only sympathy and hugs, and a hope that things will improve very soon. Hopefully others who have been through the same thing will be able to offer some tips. What is it that he doesn't like, does he find it painful? Might it be possible to go back to injections for a while?


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## Pumper_Sue (Apr 29, 2013)

hkk1970 said:


> hi, my little boy who is 4 has been on the pump now for just over 3 months.
> 
> We have had many downs during this period and things seem to have come to a head. Last night he flatly refused to have his cannula put in . Not just refusing but crying and screaming, curling up in a ball . As a mum I find this horrendous and ended up in tears myself. I called our emergency pump line, and the nurse advised me to give him a cuddle then basically told us to hold him down between me and my husband and force the cannula in. After almost 1 hour 30 minutes we got it in.  We never had any problems on injections but this pump seems to be a nightmare.
> 
> ...




Hi Helen,
           so sorry to hear you are having so many problems and the distress it's causing both you and your son 

The only thing I can think of causing all these problems is the cannula as in wrong type and or length.
My suggestion would be to get hold of as many different types of cannula you can  and try them all.
What pump and cannula are you using now?

The reason I make the suggestion is my levels would never stay stable and it became a complete nightmare. All it was, was wrong length of cannula and type.


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## novorapidboi26 (Apr 29, 2013)

I really feel for you.....it must be heart breaking to see your son like this..........

Has he always been like this with the cannula? its likely a phase and will pass eventually.....doesn't make it any easier though....

Could you maybe try putting in a cannula to your stomach or wherever  to show him its OK and that you can do it too.....

Might not be a good ides but its something I would try in your position....


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## Hanmillmum (Apr 29, 2013)

Hi Helen,

Sorry things aren't settling yet and things were horrendous last night ((hugs)). Would he have accepted an injection instead of the cannula ? It must be especially hard when your son is fighting against it as well. You must be incredibly exhausted with 2 hrly night checks. I think I have said in earlier posts that it was hard for us for a good few months too due to changing needs. Our DSN said at any point we could go back to injecting when I was ranting about it feeling beyond control during this time. 

Would this be something you would consider? It might be that the same things could be just as difficult on the injections at this time as well though. How does your son feel about injections ? I did decide to persevere and I am pleased we did as it has proved to be an invaluable tool for managing my daughters BG's.


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## everydayupsanddowns (Apr 29, 2013)

Oh Helen!

I'm really really sorry to hear what you and your littl'un have been going through  

Four months is still quite early, but it does make me wonder (like Sue has said) how uncomfortable the changes are. When I had cannulas that were just a couple of mm too long they itched like crazy almost constantly, and really really stung going in. Even at the 'right length' I had waaaay more failures with 90 degree cannulas than I seem to have at the moment with angled ones.

Has your son met any other little pumpers? Might help him to see others hos age and know he isn't alone.

The other thing, of course, would be to have a 'pump break'. Go back to using injections for a month and then see how he feels. You have to find a balance between the very control you can manage and the best quality of life - and if that is MDI for him at the moment then surely that's fine.

Dealing with D is never going to be 100% easy at any age but with MDI at least your eggs aren't all in one basket and you have a little more time on your hands if one injection gets refused. Has he seen any benefits to using a pump? Have snacks/treats been easier? Have levels been better generally?

Hope you both manage to find a way through.


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## Redkite (Apr 29, 2013)

Hi Helen,

Sorry to hear of the problems you are having.  My son was 7 when he got his pump so easier to reason with, but there's no getting away from the fact that the cannula insertion isn't painless.

There are a few strategies you could try:

* Use some emla cream (available on prescription from your GP) on the insertion site to numb the area.  The cream needs to be put on 30-60 mins beforehand (put a tegaderm dressing on it).  Your son may have used this for his annual blood tests, but if not, explain to him that it's magic cream so that the cannula won't hurt.  Once you have done a painless insertion he will trust you!

* Bribery!  Make sure something nice always follows a set change.  When my son was 4 he was on injections, but every time he had a lancet or injection stuck in him he was given a penny to go in his piggy bank (a "prickle penny).  The pig soon filled up and then we would have a trip to the toy shop.

* No Compromise!  Get everything ready for the set change before you call your son in to do it, then get it over with quickly.  Don't plead or cajole, or it will drag on for ages and be more and more upsetting.  If it takes both of you to hold him down, so be it.  Then, as soon as it's done, praise and move on to something nice.

* The Sympathy Cannula Insertion!  Have you shown him you putting one into yourself?  This worked wonders for my son.  I even let him insert a cannula into my tummy (aargh, he wiggled it around before pulling out the needle, NOT recommended for your 4 year old!).  But you could show him you understand how it feels and why he doesn't like it.

Hope these help a bit.

Re the problems you are having with his levels on the pump - it's a great tool once you've had chance to get to grips with all its features, so please don't give up on it just yet.  It could be that insertion problems have caused kinked cannulas which lead to high BG levels.  It's also the case that a growing child will have constantly changing insulin requirements - we don't keep the same basals and ratios for long!


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## Redkite (Apr 29, 2013)

P.S. I forgot to ask which pump you have?  My son uses the Veo with silhouettes as he is very skinny.  He can only use his bottom for cannula sites, not enough subcutaneous fat anywhere else (on injections he could use tummy and arms).  His old clinic (rubbish) said to use his tummy for cannulas, but we always had very erratic absorption, with sometimes wild swings in BG levels, so stopped using it.  His current team were shocked we'd been advised that his tummy was suitable!


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## Pumper_Sue (Apr 29, 2013)

> My son was 7 when he got his pump so easier to reason with, but there's no getting away from the fact that the cannula insertion isn't painless.



I'd like to pick up on this point if I may. 
The only time I have ever found the cannula painful on insertion and or once inserted is when the wrong size and or type of cannula were used for me.


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## everydayupsanddowns (Apr 29, 2013)

Pumper_Sue said:


> I'd like to pick up on this point if I may.
> The only time I have ever found the cannula painful on insertion and or once inserted is when the wrong size and or type of cannula were used for me.



That's really interesting Sue - I wonder whether your experience with this (and maybe our conversation the other day about bubbles?) might be connected to Animas having better inserters/reservoirs? Have you always used Animas, or have you had other brands before?

I'm another Medtronic user who has pretty much *never* had a completely painless cannula insertion. They aren't very painful as such, but it is like then you nicked a capillary on MDI and had a bit of sting. The silhouette kerplunker in particular seems a bit over-enthusiastic and well and truly makes sure the cannula has gone in 

Maybe I'm just a bit of a wuss?


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## Redkite (Apr 29, 2013)

Sue I think fear makes it worse!  There are fewer nerve endings in the abdomen area so it is less likely to hurt there, but piercing one's skin with a needle is still not without sensation.  Some people have a lower pain threshold, me included!  Some of my son's cannulas "sting" more than others, some he hardly feels.  If he still feels any discomfort half an hour after insertion we would take it out and do another.  He doesn't use emla cream these days, except for inserting sof sensors, whose needles are massive!


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## Redkite (Apr 29, 2013)

Mike, if you are a wuss then so am I!  My son uses 13mm Sils, angled so they sit in what little fat he has.  I on the other hand have plenty of fat, but when I've tried them on me they flippin' hurt!


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## Pumper_Sue (Apr 29, 2013)

Hi Mike, I had a Cozmo pump before and used the cleo 90 cannula, no pain with them at all, control went up the creek when my body shape changed thus that cannula wasn't suitable anymore.
Had a dread experience with all the cannula's on offer from animas except the inset 30 degree. The contact detach worked, in it delivered the insulin, but very painfull and more than pleased to be rid of after 2 days. Infact I dreaded set changes.
Life is good with the insets though, completely pain free and good numbers. 

PS Mike, no bubbles using the Cozmo either


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## Pumper_Sue (Apr 29, 2013)

> Sue I think fear makes it worse!



Well of course it does and if he fears the cannula with good reason ie, it hurts, then a solution needs to be found sooner rather than later.


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## hkk1970 (Apr 29, 2013)

Thank you for your support and kind words.

I really dont think it hurts him when it goes in , I just think he is fed up and he is very strong willed. Our DSN showed us another cannula but this would be inserted with what looked like a hole punch !! So I dont think that will be an option some  how.

I resorted to bribery in the end, I had bought some smiley face biscuits and gave him 2 of them, so that is my tactic tomorrow evening. Good idea regarding the money as he has just got a new piggy bank and this could work.

i am really at the point of giving it in and goin back to injections but again am apprehensive to request it from his team, should I give it longer, I really dont know. The only advantage I have with it is that he can snack more often with just a press of a button. We didnt give insulin before for snacks just corrected at next meal..

We have also had 6 blockages in the past few months which hasnt helped with cannula changes, the team dont know what the reason is only that he is having so little amount of insulin that if it nicks a blood vessel then thats why is blocks up.

I am just dreading tomorrow evening's cannula change. I will let you know how we get on..

Once again thanks for the support


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## rossi_mac (Apr 29, 2013)

Sorry to hear what you are going through, can't imagine it, have a little one ourselfs, I'll say it again can't imagine what you have to do and whatyou are going through, hope you stay strong.

Take care and best wishes, and good times are ahead.

Cheers

Rossi.


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## Pumper_Sue (Apr 29, 2013)

> We have also had 6 blockages in the past few months which hasnt helped with cannula changes, the team dont know what the reason is only that he is having so little amount of insulin that if it nicks a blood vessel then thats why is blocks up.



Glad the bribe worked 
Now if there is a blockage there is a reason, so look a bit deeper. Next set out look at the very tip of the cannula and see if it is slightly pinched.

You haven't said what pump and what set you are using, can you enlighten us so we can help a bit more?


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## Redkite (Apr 29, 2013)

Bless him, 2 smiley face biscuits definitely make it all worthwhile 

I understand your problem with the tiny basals.  Have you tried doing the set change just before a meal, so that you will be flushing an insulin bolus through the new cannula straight away?  This could help if there is sometimes a little blood seeping into the end of the cannula, as it will get "washed out" again by the meal bolus before it has chance to clog up the cannula.

I know lots of other parents including me went through a phase early on in pumping of wanting to chuck the thing down the toilet, but there is light at the end of the tunnel and it's well worth persisting.  Your son is at the age where kids get invited to whole-class parties the whole time, I can remember there being mid-afternoon party food almost every weekend at that age, nightmare for us as he was on mixed insulins, but easy to manage on a pump!  And all those wonderful tummy bugs that he will inevitably pick up at school - a million times easier to cope with on the pump   Give it a while longer.........


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## Lauras87 (Apr 29, 2013)

Awwww bless him!

I'm sorry it's so bad for you & him, maybe like the others said its his cannula size thats the problem.

Now this maybe bad parent bribery (I'm not a mum just a big kid) but maybe if he gets on with the pump, you could suggest a pump pet for him to sleep with so he accepts the pump & everything that goes with it?


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## Adrienne (Apr 29, 2013)

Hiya Helen

I'm sorry to hear this is happening, it must be quite scary for them.   My daughter has been through all the ages but started pumping only aged 6 so bit older.   Bribery is fab and we used that for Lantus injections when she was 3 and 4 years old.   We used hair clips and slides and bits like that which she loved and used to dip her hand in a bag and get whatever she pulled out, one bit at a time of course with each Lantus injection as they stung.

Pumping though is a bit different.  Firstly what pump is he on?  If you are having problems with the sets you are using then they are not the right ones.   I firmly believe (as do our team) that the canula will choose the person.  

We are Medtronic and my daughter had silhouettes for a few years to begin with, out of all of them they do hurt the most as it is like using a harpoon to insert them.    We then tried Quicksets but hated them, Jessica couldn't get on with them at all so we went back to sils then when the mios came out we moved to them.  

They also do another option which I know some little kids have, think they are called Sure T's or something.

I can't help with the other pumps but they are all similar in as much as the set will choose the person.  

Also where do you put it.   For a little one the butt is the best place or maybe the upper outer thigh perhaps.   We used the butt for a long time until about aged 9 ish I think, then moved to the tummy.

It will get better, there is your reassurance.  I know only two families who gave up the pump and that is because the children were teens and wanted a break but they both then chose to go back to it after a year.

However it will only get better if your team are helping you to tweak things or help you to be confident yourself to do it.

One bit of advice we were told by our fabulous DSN was to trust the pump.   HOwever that doesn't just happen overnight, it will take a while.  I think after about 6 months I remembered what she had said and realised I had been trusting the pump for a few months by that point.    

Concentrate on night time basal rates first, you need to get them pretty much right first of all.   Start at midnight or a few hours before midnight and go from there.  Once you have the night basals sorted it will be so much easier for you to do the others block by block and it will all fall into place.  Whilst sorting basals best to avoid things like pasta or pizza which are nothing but a pain in the jacksey till you know what you are doing.  

I hope that helps.   If I can answer any question at all please ask.  Feel free to pm me or email me.   My daughter has been pumping over 6 years now and is now 13 years old but I do understand what its like to have a 4 year old with t1 as Jessica was around 5 or 6 weeks old when she had her first insulin injection.


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## hkk1970 (Apr 30, 2013)

Hi everyone, I am overwhelmed with all your support.

Harry is on the accu check combo pump, rapid d cannula's......


If it was on the top of his bum, how do we go on pulling trouers down for toilet trips !!   He goes on his own to the loo and just whips down his trousers in a flash !!! Would the cannula come out easily ...

change of cannula etc again tonight, will post tomorrow how we go on...am not looking for ward to it though.

thanks again helen


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## Redkite (Apr 30, 2013)

Hi Helen,

Not sure about your rapid D cannulas, but my son wears his cannula at the top of his butt too, and they have withstood some rough treatment including wrenching off trousers without bothering to undo the button and zip!  They are quite robust usually.  The only time he's had an issue is when the tubing got caught on something and pulled directly on the cannula (so a direct tug rather than a sideways knock).

Good luck for later on, get those smiley faces at the ready!


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## Hanmillmum (Apr 30, 2013)

Good luck for tonight, will be thinking of you!!

We use the Sure T cannulas mostly for Mills which are similar steel ones but for the Medtronic pump? We use her bottom predominantly and she doesn't bother making a fuss there, but she will with her tum, she is very lean there still. I pop a little micropore tape over the top of the cannula as dd is probably very much like your little one, trousers/tights down without much consideration. If I catch her heading to the loo I shout after her to watch her "button".

I've tried a few different cannulas on the tum and none seem ideal yet - control is not as good and I get the feeling the cannula is possible hitting against muscle ? I don't know but feel much better with the buttocks at the mo.


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## Adrienne (May 2, 2013)

Hope set change was ok.  

To be honest I don't know many, if any actually who at that young age have their cannula on their tummy, it is only ever on their backside.    You don't often hear of cannulas being yanked out with trouser pulling up or down either.


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## spiritfree (May 2, 2013)

Hello. I don't know if this would help but it would be worth a go. Jdrf have a pack, for children, which has a teddy bear with little patches sown on him where infusion sites go. It is really lovely. I got one to explain to my little grandson, why and how I use a pump. It all comes in a lovely drawstring bag which has loads of information to help children. I'm almost sure it's free. Maybe if teddy had a pretend infusion set your little boy would have his. I hope this helps you.


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## Adrienne (May 2, 2013)

spiritfree said:


> Hello. I don't know if this would help but it would be worth a go. Jdrf have a pack, for children, which has a teddy bear with little patches sown on him where infusion sites go. It is really lovely. I got one to explain to my little grandson, why and how I use a pump. It all comes in a lovely drawstring bag which has loads of information to help children. I'm almost sure it's free. Maybe if teddy had a pretend infusion set your little boy would have his. I hope this helps you.



Ah ha this is Rufus the bear and all the kids love him.   We were lucky enough to get Ruby, Rufus' girlfriend or sister or whatever she/it was.  What a fab idea Spiritfree.   

Do get a Rufus bear.   It can help no end x


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## Northerner (May 2, 2013)

spiritfree said:


> Hello. I don't know if this would help but it would be worth a go. Jdrf have a pack, for children, which has a teddy bear with little patches sown on him where infusion sites go. It is really lovely. I got one to explain to my little grandson, why and how I use a pump. It all comes in a lovely drawstring bag which has loads of information to help children. I'm almost sure it's free. Maybe if teddy had a pretend infusion set your little boy would have his. I hope this helps you.



This is the link for a Rufus:

http://www.jdrf.org.uk/shop/products/t1-kidsac


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## hkk1970 (May 2, 2013)

Hi, yes we have rufus and he is not bothered about him at all !! 

The cannula change on Tuesday didnt go well again, though this time only took 40 minutes but we did have to hold him down whislt he was screaming. Have talked to him about having it in his bum but that made him worse.

Im dreading tonights one again, though tonights bribery is if he has it done quickly he can go up into the loft for a look !! Whatever next....

This diabetes lark is on my mind 24/7 , today's worry is not only the cannula change but his levels have not come down since snack time, and I fear a blockage is brewing cos this is usually what happens.  Am currently at work waiting for the 2pm blood test at my in laws hoping he has come down, i fnot home I go to change everything.. This is happening far too often.

We are off to centre parcs tomorrow and I just want to look forward to it but again am dreading it , its a constant worry when he is active, asleep bsically all the time !!

I really cant see any light at the end of this long tunnel I am faced with, he starts school full time in Sept which is fast approaching , I just want things to be settled by then..

Once again, thanks for your support.
Helen


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## everydayupsanddowns (May 2, 2013)

You are doing a brilliant job. (((hugs)))

The first time I had an injection in my buttocks I hated the idea (it was a tetanus jab). Thought it was sooooo embarassing.

*but*

Once I'd been convinced (there are fewer nerve endings there) I couldn't believe how pain free it was. Really hope you can persuade him to give it a go. 

Frequent blockages do sound like something's not right - and given your litlun's reaction to changes it would be great to get those sorted/resolved. Have you had any suggestions from your clinic/team? Do they know the position you are in?


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## Redkite (May 2, 2013)

Hi Helen, things will improve eventually I'm sure.  How sweet to be motivated by a trip into the loft   It could well be worth trying some different cannulas on him, especially if you are getting frequent blocked ones.  Do they looked kinked when you take them out?  I wonder if some of his struggling and wriggling means you end up not being able to insert it correctly sometimes?

We are going to Centerparcs this weekend too . It's my Dad's 70th so the whole family are going (Longleat).  Which CP are you off to?  I know what you mean about looking forward to it but dreading the D care, I know we will be chasing his levels the whole time, but I'm sure you'll have fun.  I don't know about you, but D means I get less sleep and R&R on holiday then at home!


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## Adrienne (May 2, 2013)

Redkite said:


> Hi Helen, things will improve eventually I'm sure.  How sweet to be motivated by a trip into the loft   It could well be worth trying some different cannulas on him, especially if you are getting frequent blocked ones.  Do they looked kinked when you take them out?  I wonder if some of his struggling and wriggling means you end up not being able to insert it correctly sometimes?
> 
> We are going to Centerparcs this weekend too . It's my Dad's 70th so the whole family are going (Longleat).  Which CP are you off to?  I know what you mean about looking forward to it but dreading the D care, I know we will be chasing his levels the whole time, but I'm sure you'll have fun.  I don't know about you, but D means I get less sleep and R&R on holiday then at home!


Wow if you went to the same one and if little boy saw big boy, both pumping how cool would that be for little boy.  

I hope both families have fun.

Just in case this helps we went to centerparcs year before last to the Longleat one and obviously we all wanted to swim together so I had a word with the lifeguards and they have have a first aid/office type room just by where one of them is always standing and we were allowed to put a rucksack in there by the door with the insulin pump in and hypo treatment etc.  I was allowed to go in and out just to get bag or pump or whatever and each life guard told the next one who was going to be standing there what I would be doing.    It was really convenient.  

Have fun


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## hkk1970 (May 2, 2013)

Hi redkite , we are going to Sherwood Forest..Its my inlaws 50th wedding anniversaryand they have paid for us so even better !!

I hope you have a lovely time .

I am hoping to sleep a little better , I dont get much at home , my husband sleeps through anything and does not wake in the night to check harry's levels so its all down to me really...

The cannulas never look kinked or anything , I dont really know the reason we get blockages...


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## Redkite (May 2, 2013)

Hope you have a lovely time at Sherwood!

Adrienne, thx for the tip - we usually do leave dextrose with the lifeguards but hadn't thought of trusting them with the pump.  I'm just hoping I still fit into my swimming costume, haven't been swimming for at least a year.


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## Adrienne (May 2, 2013)

hkk1970 said:


> Hi redkite , we are going to Sherwood Forest..Its my inlaws 50th wedding anniversaryand they have paid for us so even better !!
> 
> I hope you have a lovely time .
> 
> ...



Hiya

Are you sure it is blockages?  If it is set time day and for the hours before a change or whole afternoon before the change then it could be adrenaline causing a rise in levels as nerves and apprehension appears.    

Or is it on day three that you do the set change?   It may be if this is a pattern that unfortunately he may be one of the ones that needs every other day which I know would be a disaster for you (unless you are already doing that of course) or 2 1/2 daily.   

Just trying to think of ideas


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## Adrienne (May 2, 2013)

Redkite said:


> Hope you have a lovely time at Sherwood!
> 
> Adrienne, thx for the tip - we usually do leave dextrose with the lifeguards but hadn't thought of trusting them with the pump.  I'm just hoping I still fit into my swimming costume, haven't been swimming for at least a year.



I did keep telling them it was worth thousands of pounds of money and nobody could touch it and it was my daughter's life support just so they got the idea it was precious.  It worked anyway


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