I have never seen so many 20s mmol (360) as I have seen since putting Payton on the pump. His A1C was 7.2 on needles with considerable effort by my husband and I. My son is 4yrs old. Diagnosed at 3yrs. It is time for another A1C. I don’t want to find out.
I love math, I like to talk numbers, I am good at carb counting and even like it. After having an immense amount of problems with starting Payton on the pump, I never gave up.
I tried Orbit micros for 3 months, Cleo and Rapid D for a few weeks, now Payton is on Inset IIs.
We have had insulin bubbles under the skin twice with Orbit Micro, occlusion alarms a lot. Twice the tube came off the cartridge sending him over 30 (540) and lots of blood in the tube.
He has an unpredictable Dawn Phenomenon, on a good day his site will last 30 hours, on a bad day like today his site lasts 10 hours.
4 times Payton ripped the metal infusion set right out of his bottom by accident. We finally gave up on Orbit Micros.
Payton’s bottom won’t absorb any more insulin. We’ve moved to the legs. Legs are hit and miss whether the site will last more than a day. We already used up the legs on needles 6 months into the disease but it has been 9 months since we’ve used the leg. Shouldn’t it be good by now?
With the Inset IIs we have had one bad kink and two small kinks. After consistently putting them in the freezer before use it has cut down on the kinks 99%. We have a lot a lot a lot of gigantic bubbles in the tube. It is a guarantee if there is less than 10units left in the cartridge the occlusion alarm will go off. We change the cartridge and insulin after it gets down to 20 units now. We do all of the things you should do. Insulin is warm, cartridge cap is within 6 mo. Pulled the cartridge ring back and forth two times to distribute the lubricant. Filled the vial full of air before inverting it. Making sure all of the bubbles are out of the cartridge before connecting the tube. Full battery on the pump. Priming all of the bubbles out.
After a day sometimes I will find a bubble an inch or more long in the tube. When is the alarm supposed to go off? My kid is 4 and jumps around and is upside down a lot. There is no belt or contraption to hold the pump in a vertical position that will work.
Pizza and Peanut butter are out of the question because I can’t seem to make a perfect combo bolus for him. He goes high on hour #6 sometimes after eating them and sometimes the exact same pizza and combo bolus will work.
The bath makes him go super low. I have to feed him 13 carbs to compensate.
So after 5 months of this garbage and staying strong and making little rules to remember for this and that you know what happens?
My husband changes the site yesterday. I lasts one day. I change the site this afternoon because he hit 20 (360) {I poked 2x to make sure} and he gets into range within 1 hour with 1.3 IOB. OMG. so I feed him a yogurt and cucumbers and peanuts without insulin and he is fine (2pm). He is fine at bedtime snack (730pm) and then 3 hours later (1030pm) he is 21mmol (378 in USA) with 0.1 Ketones. I correct and an hour later he is exactly the same with 0.00 Ketones. WHAT?
So now it is Midnight. Husband already went to bed after the first bad poke knowing it will be a long night.
What am I supposed to do? I have been watching for bubbles all day and there were only little tiny microscopic ones every now and then.
Am I supposed to change his site every day and if I get a bad one then I change it again. So 3 new sites in 2 days?
Is this the better alternative to long acting insulin?
2, 20, 2, 20 bounce bounce bounce. This is so awful for Payton. He is healthier on needles.
Hospital used to get back to me right after I faxed in the numbers, now they wait 2 days to call and then ask for updated numbers because the numbers I faxed in are old. Then when they get the numbers they try to fit him into some kind of mold. Like his basals and boluses should be a certain percentage of each other.
I can’t help it if his basals are too low compared to the TDD. He is constantly jumping. ALL DAY. If he watches TV he jumps the whole time. When he is in swimming lessons he jumps in the water the whole time. Surely a perpetual motion machine would have lower basals than everyone else in the world. The hospital probably thinks I am not listening to them so they have lost interest in helping me. I haven’t talked to the hospital since 01/01/2011.
Besides, they have a new batch of pumpers to look after. Husband’s checked out recently. Too much stress while he works and goes to school.
Sigh. I feel defeated.
I just went and poked him again. 16 (288). At least he is coming down.
When does the pump work? This sites have to last longer. How do you do that?