Yes, this is another WHY IN THE WORLD ARE WE PUMPING? post. It's past midnight, my son has been in the 400's since 9 pm. We've followed pump protocols, yet we don't see any improvements. The second time in a week!! 400's are not good....and they are coming at night. So that means hourly checks to make sure we see the numbers come down. How am I to get any sleep? The stress of the high numbers keeps me up wondering if he's getting any insulin......if he'll end up being sick in the morning if I let it go....which he would be, by the way!!
I'm about done with this little "pump experiment". Right now I am saying it's definitely NOT working for us. At least on Lantus we got sleep!! We only had to get up once in the night with Lantus. At least on Lantus we could go to social situations.....where the food is somewhat hard to count carbs.....and come out "reasonable", and see the numbers come down quickly.
NOT HAPPENIN' on THE PUMP!!!
Tonight was another "big" night. Our church has a "Reformation Party" every year to replace halloween. (Long story...let's not go there.) At any rate.....the place was packed full of sugar!! I didn't like Halloween before diabetes....now I loath the "holiday". It's a diabetics nightmare.....and for kids especially. I have to confiscate all the kids bags when they get home and "regulate" the influx....I've done that in the past pre-diabetes....you forget I have a Smarties Suspect .....I just can't trust some of my kids not to eat the whole bag of candy in one sitting. Anywho....
J.J. tells us he didn't eat any "extra" candy....actually I don't think he had one piece of candy, but he did have a rice krispie chocolate bar my hubby made for the party. We dosed really high for it....thinking for sure we've covered our basis.
AGGGHHHH.......I'm up late trying to rack my brain again. What, why.......how did he get to the 400's.....and why isn't he coming down??? We just didn't see this on MDI.
So yes, tonight....or should I say...this morning I am severely disheartened with the whole pump thing....I fought the pump and the pump won. I really think I'm done with it. I want sleep, I want a peace of mind, and I'm sick of troubleshooting the thing all the time.
*****EDIT******
UPDATE: 1:45 a.m.--This kid is not coming down. I wish I could figure out what was going on. He has an insulin sensitivity factor of around 200 at night......that means one unit of insulin can bring him down 200(normally). So far this evening he's had 6 units since 9pm!!! SIX UNITS! Four of those units have been by injection in the belly. Plus we've increased his basals to 125%. He is still in the 400's! I'm praying now for strength....Phil 4:13.
AS A POSITIVE......I'm learning a lot on these nights I do stay up. My mind has a hard time concentrating, and my body is often too tired to do much either, but I manage to learn what it's like to pray and to listen to some awesome preachers.....sometimes they actually help me fall asleep:-).....yes, their voices do lull me to sleep, but often it's the words that calm my heart. Reminding me that even though this disease is maddening and constantly changing .....my God isn't. He is constant in His love and care for me and J.J. God loves J.J. more than I ever could. His love never fails or falters. So when I'm weak, tired, and weary, these sleepless nights are providing me much time to learn more about my God. So in that I can be thankful.
One more positive.....it's "fall back night".....YIPPEE....my computer clock just went from 2 a.m. to 1 a.m. .....I gained an hour of sleep. We may actually make it to church on time.....if I can crawl out of bed in the morning. We shall see!:-)
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5 comments:
I'm sorry it was such a rough night. I hope it got better. I'm praying for you.
I'm wondering if maybe JJ was having the high because of excitement? Kacey had those unexplained highs leading up to Halloween and then she was high before we left but after being "active" at the party she started to fall pretty fast. I hope things get better for you soon! We're thinking about you :) **HUGS**
I can sympathize -- we've been on the other end of the spectrum recently, with Richard having random lows during a recent vacation to FL.
A few thoughts --
1) Have you tried out a few different kinds of infusion sets? Straight, angled, perhaps a steel needle set? I hear from my friends at T1P that changing sets can make a major difference in insulin absoption for some kids.
2) Where's your endo in all of this? Are you in touch weekly, or are you doing all of this debugging yourself? I know that with the MiniMed pumps, the endos have a different version of CareLink that provides much more detailed reports.
3) How are you doing your carb counting? We started weighing everything Richard eats with a digital scale, and I found that it offered us MUCH better precision carb counting than using volume-based amounts. A lot of nutritional packaging is flat out WRONG when it comes to the volume of a serving size, but the weight provides much greater reliability.
I really hope pumping works out for JJ, but you have to do what's best for your son. You're DEFINITELY in my prayers. Hang in there, girl!
When I get highs that won't come down, I sometimes have to go up to a 160% temp basal rate. Don't be afraid to use more insulin if you need to. More insulin does not equal failure. Having good blood sugar is more important than how much insulin you use to bring it down.
I HATED our pump the first entire 2 months! I was a mess too! We had the same problems with highs. Our basal wasn't high enough, you can usually bet when a high doesn't come down like you explained it is a bad site or off basal rate. (I know you know this!)
I promise you will get it figured out and I know you want it figured out NOW....please keep your head up, you CAN do this and you WILL get there, I can't tell you how many times our pump was about to be tossed into the fire. .....HUGS and PRAYERS!
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