The 'New on Pump' thread!

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His day included 2 hypos -- both caught in routine testing, ack! One when he was already on a temp basal...SO basal rates now being lowered for the moment while we get him through this, and THEN make use of temp basal on top of that...Lordy. It's the weather, I'm sure.

Argh. But should be okay.
 
Despite one of the worst nights imaginable last night, E is in France and well. He fought low numbers all morning despite being on a lowered basal AND a 75% temp basal, and we have yet to hear his level tonight. But he's been in good contact with his dad, and all seems very settled. He *has* texted to say he's having a wonderful time. Which is worth everything.

The worst night imaginable came from how wrong simple things can go: set change, and suddenly he can't re-connect the little pipe, having fiddled a little and unclipped it. He can't and can't re-connect. So poor thing has to start over. Remove this one and do another. But something goes wrong with that too. Tired, packing, apprehensive. All falls apart. Third time lucky and all is in, but he is wrung out like a wet rag, and we are nearing meltdown with frustration and helplessness that he has to do this and we don't/can't.

He comes upstairs though and says he's okay, alright, though I'm thinking if I were him I wouldn't be. He packs, we talk, and he goes to bed.

In the night, as I say on the other thread, we wake to this huge bang bang. The pump has fallen down behind his radiator, and in his sleep he's trying to recover it. I imagine the set being pulled out, or at the very least, not working...This doesn't happen though. As the morning goes on, from his texts clearly all is well.

Part of the stress last night was the sheer thinking through of what needed to be brought with, how to store it and when. The fact that he needed to remember to store the insulin in the fridge. Does his dad bring a set change too, or is that just silly? What bag will he carry his juice and glucose in? Can we fit it into his luggage? Will he remember to shift this stuff actually into the bag on the bus?

I *thought* I'd worked through everything, so that the packing would be smooth. But I hadn't, as what he wants to do also plays a part. So we had to make it up as we went along, come to agreements, leave the little bits, stress the big ones...Sigh. It was all I could do to keep from texting him every half hour this morning. But I resisted.

This afternoon I returned from a lunch out with my daughter, and went straight to sleep. I'm assuming, have to assume, that all will be okay.
 
Went to bed on 7 (reporting in at 11.30pm! eek!), stayed on 75% all night. Woke this morning to 7.9 (good on ya', boy). On 75% today too, but has reported mild hypo, so his dad has asked him to go to 50%. He's walking around all day, swimming this afternoon. Incredible the effect of heat and exercise!

Good boy though.
 
Patricia, those levels are great arent they? Does E make the decisions himself about whether to do a 75% etc? He is doing brilliantly and so are you as i do know how hard it must feel to have him away so soon after pumping!🙂Bev
 
Hi bev, good to hear from you -- was feeling lonely!

He made the decision yesterday to go to 75% as soon as he was fighting morning lows. He also made the decision to stay on 75% last night, but double checked with dad. Today's move to 50% is dad's request, and we're checking this with DSN. The swimming this pm is a little worry, as he's *always* dropped when swimming. This is where one of his teachers has been somewhat primed -- E must check his levels every 40 mins or so. The swim is apparently a long one, and great day for it, but... Being off the pump for that time may help balance things though -- be interesting to see.

He *is* doing so well. I'm feeling better, and know this is an experience to build on, as a good friend of mine said. So good for E to do it.

Thanks Bev!
 
Patricia,
Just to let you know - i always read your posts on pumping - i just dont always comment because i have nothing to compare it to - yet!

Do you think you are less worried with E being on a pump and being away in France, as opposed to him being on MDI and being away in France? Perhaps its early days for you to give a definate answer?
Alex has a day planned with his new school in september - a full-on day of activities - nightmare trying to think of all the 'rules'! Also dont know if he will be pumping or on MDI by then!😱Bev
 
Yes, I guess on balance I am less worried with E on pump -- and the basic reason is because the pump is SO much more flexible than MDI. He can change it minute by minute, and the effect will be within an hour...Whereas on MDI, he would have to deal with whatever decisions he made 24 hours ahead of time for levermir and 3 hours before with NR. We felt more nervous about the technology of it -- more to remember -- but the actual results of it are much more predictable, so all in all much easier. The wizard is good too for helping him understand his targets, calculate his doses, etc...so he is doing none of this in his head as he would have to on MDI. He tends to check it -- knowing his ratios, etc -- but lets the pump calculate everything and sees if makes sense...This is a huge relief, because the potential for real error is enormously reduced.

So yeah. Pump definitely less stressful. And in France all children are on pumps anyway, so we did think oh well if something happens, at least the medical staff would know what the heck it was!

Thanks bev. Glad to know you're reading. I just don't want to be boring everyone to death.

xxoo
 
You are certainly not boring me Patricia! Even though you are in a very different scenario to me, I find all your reports of great interest, so thank you for taking the time to write them up.🙂
 
Northerner, thank you. Appreciate it. 🙂

Report from the front is that swimming has happened without real hitch -- one hypo, dealt with. He is still on 50% temp basal. Phew!

Now my maternal agitations are revolving around much more usual things: I didn't send him with suncream! And he's *really* pale, bless him. Not that any boy, I imagine, of 13, with friends, would deem to put the stuff on... But he could be burnt to a crisp!

Will parental worry never end? Before you all join in, I know the answer is 'no'....
 
Hi Patricia

I read all your posts as well as obviously pumping interests me and I just want to help everyone. If there is anything I can help with I will always reply. You are doing fantastically. I think you are an amazing person with a lovely son who is obviously very responsible.
 
Thanks so much Adrienne. Not sure I feel amazing at all -- but I do know my son is!

Glad to know you are still reading. As long as it's all okay, I'll keep going -- soon to be joined by the ever-entertaining Sugarbum!
 
Late evening check in again -- mild panic, but really just mine, he's a sensible young man -- 9 mmols. Some kind of temp basal arranged with dad. All seems well. SO glad he's been able to enjoy this. The confidence it will give him is immeasurable I imagine....

All this means too that his own dosing has gone well. I've just realised this. He's dosed his own breakfast lunch and dinner OUT at restaurants, and ended up with 9 at the end of the day! Wow!
 
Patricia,
Thats brilliant news! He is obviously confident at carb counting which is excellent and will stand him in good stead for the future. Can 'E' come and shadow Alex when he starts pumping? lol. You must be very proud of him and rightly so.🙂
Alex has started to guess the carbs in a lot of foods now - sometimes he is spot on - other times not! Once i have weighed something like rice, i get him to guess the carbs without letting him see the weight - he is getting a bit better at it - and will usually air on the side of caution which is probably better than over-estimating!🙂Bev
 
Morning... Yes I'm sure that under-estimating rather than over is the way to go -- and I suspect this becomes reflex. With a pump too the correcting later is much more accurate, so you don't feel on a slippery slope if it goes a bit wrong -- much easier to catch up with things later...

He woke on 8.9 this morning after a night at 60% -- compromise with dad, apparently!

One thing I forgot to say is that we also temporarily shifted his target range to 7-8mmols, to keep him a bit higher. Not sure if that worked, but seemed a good idea at the time! His range is normally 5.5-7.5 I think...

Good for Alex in guessing carb -- the freedom to do this is so welcome, isn't it? I'm sure it's never a perfect science, but feeling comfortable with it is a start...
 
Patricia, can i ask a simple question? Where do you get the sets, tubing insulin from? Is it all from the gp or from the hospital! I only ask as my chemist is a new one and i was telling them about the pump etc and they are not certain who supplies what! Thanks. 🙂Bev
 
Hi Bev

If you go for a Medtronic one and I can only speak about them what normally happens is you ring Medtronic direct, they are very nice and normally good, order what you want, 3 months worth of stuff at a time, a courier delivers it to your door. That's it. Medtronic send the bill to the PCT direct or via the hospital. You order the pump tubesm canulas (all joined), reservoirs, batteries etc. I also order the sensors, sticky things to go over them and I think thats it. All very simple and straightforward. No chemists involved.

If you want Cavilon or Lift Plus then that is on script.
 
Don't wait till half way through the last box Patricia. Order just before you open the last box of whichever then place your order. Don't forget batteries, I always do.
 
Oh lord you're right Adrienne. We've been so fraught I haven't even sorted out where to store things, so it's all dangerously chaotic...Okay will look at things...

Thanks.
 
I have had to use one and a half cupboards in the kitchen !!
 
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