First, I want to tell you how it is set up. He's getting a basal of 0.025 from 12 AM until 8 AM. Then, he switches to 0.075 from 8 AM to 12 PM. Then, he's 0.05 from 12 PM until midnight. That's a total basal of 1.2. Before the pump his Lantus was 1.5 units and his NovoLog was 1.5 units (not counting corrections). But, he'd been running a little high most days. His target is 160 +/- 10. His sensitivity factor is 250. And his carb. ratio is 1:50.
I don't think I had let anyone know that we also had an endo. appointment yesterday. We went first and got his pump started on insulin and then 2 hours later we were in the endo's office. First things first. His A1C is 7.6 (yeahhhh!!!!!). I know to some adults that may sound high, but a normal A1C for Riley's age is 7.5 - 8.0. It was 7.8 in December. But, even with that good A1C his numbers have been "choppy", just so up and down.
I've read three books about pumping. All of them were recommended by Sandra in this post . All of them were very helpful and I learned a lot. I highly recommend them to anyone that is thinking about trying the pump or is in the process of a getting a pump. A couple of the books had very short chapters about toddlers on the pump. But, other than that they are pretty much geared towards adults. So, I wasn't really sure how the Dr. was going to do things. I had an idea. It wasn't anything like I thought.
I had faxed a week's worth of sugars from the pump start so she could look at them and figure out his basals from there. When we left the pump start, we were on a 0.05 basal 24/7. That was just a starting point to get us to the appointment. Then, she included us in the basal adjustments. I am very impressed with her knowledge. She knows how freaked out I get from the lows, so she actually started his basals a little lower than what she wanted just because I told her I'd rather he run a little high and up his basal than run low and have to decrease his basal.
So, here's the plan. For now, no insulin between meals. Even if his sugars are a little high, she wants us to wait until the next meal. This is what we were doing with injections anyway. She said if we start correction every time he's a little low, she will not know how his basals are doing for him. I guess she's trying to avoid the whole fasting thing since he's 3 and he's actually lost a pound since his last visit. She really wants him to eat. She wants him to have a 15g snack every day at 3 PM and a 15g snack (with fat and protein) at bedtime. She says the key for now is consistency. This all sounded great to me, until we actually started doing it.
His first sugar after being connected with insulin was 321. Keep in mind, he hadn't had his morning Lantus dose, so this wasn't too surprising. He got a correction of .55 (we hadn't had the endo. appointment yet, so we didn't know about the whole no insulin between meals thing.) His lunchtime sugar was 210. At 3 PM: 144. He got his 15 g snack. One and a half hours later it was 228. I expected it to rise, but was surprised that it didn't rise more than that. His pre-supper sugar was 179. So, I'm doing a little happy dance. But, I danced too soon. His pre-bedtime snack sugar was 272. Ok, so I try not to panic. He had some pasta at supper and I'm thinking maybe that it's still working on his sugars. Michael and I had a little round about giving him a bedtime snack. I was against it, but his argument was that the Dr. wants consistency. I'm hoping that a bedtime sugar of 272 is not going to be part of this consistency, so I forego the bedtime snack. My thinking was that if the set was bad it would make it harder to know. If we gave him a snack, of course his sugar would rise and I wouldn't know if it was just the snack or if he wasn't getting his basal. Now, we're not supposed to correct and she was very adamant about not correcting after supper since his sugars drop so much at night. I check it every hour thereafter. It continues to hover between 272-288. Then, at 2:30 he's 309. Ok, I'm done. The set is coming out. I removed his old set and it was clogged with blood. Now, at least I know what the problem was. I think I even know what caused the problem. He was running around last night. Michael was chasing him and he bumped into the entertainment center and said "Ow!" He was holding his little butt. I looked at the site. It wasn't pulled out and Riley quickly went back to running around. I think he may have bumped the site and caused it to kink.
Luckily, Riley slept through the site change. The only thing he did was when I put the needle in was pick his head up for a second and said "Can't we just go to sleep?" Then, his head was back on the pillow and he was back in la-la land.
So, now we have a sugar of 309 and I'm thinking he hasn't had in basal in about 6-7 hours. What to do. I put his sugar in the pump. It suggests a correction of .35 units. I go against medical advice and give half. He got a dose of .15. One hour later, he's 140. I'm not really sure if I should feed him. When he was on injections I would, but now his basal is lower at night, so I'm not sure. An hour and a half later I find out that I should have fed him. He's now down to 50. He gets his trusty drinkable yogurt which usually dose the trick all by itself. But, I panic and throw a few cheese crackers in the mix. He goes up to 105. He wakes up with a sugar of 287. Now, is it that I overloaded him with carbs are is his set not working properly again? He eats breakfast and gets his bolus. An hour later he's come down a little, to 239. I'm thinking his set must be working because after eating if he didn't get his bolus, it would go up, not down. 2 hours later it was 195. Now, I'm feeling better. But, not for long. At lunch his sugar is 63. We get him up to 97 before he eats lunch. He gets his bolus. At his 3 PM snack, he's now 277. AGHHHHHHHHH!!!!!!! I was lying down for a much needed nap at the time. Michael gave him the 15 gram snack that was ordered. I just checked his pre-supper sugar and he's now 258. He's eating now. Then, he'll get his bolus and we'll go from there.
Here's what I think is happening. I think his numbers where good yesterday because he still had a little bit of Lantus thrown in the mix. One book I read said it takes 36 hours for the Lantus to go away completely. That means he was getting a little bit extra basal until about 9 PM. This also helps explain why it took so long for his sugar to really go up after his set kinked. ( If it did kink when he bumped it.) This leads me to believe that his basals are too low. But, the endo. really stressed not to jump at changing them so quickly. That's why she wants consistency. So, she can really see what's going on. I believe his low today may have been caused by increased activity. Holden had basketball practice this morning. (He's on an AAU team.) Riley ran up and down the bleachers for most of the practice. And me, being a new mom of a pumper didn't think to suspend or decrease his basal while all of this was going on.
I have the Dr's cell and home number. She didn't really want to make any changes until Monday, but told me to call this weekend if I was very unhappy with his sugars. I'm going to hold off for now. If we continue with the way things are I'm calling her in the morning.
He just got through with supper and got a 1.05 unit bolus. This is a lot for him. I'm going to check in an hour and see how it's going.
That's how pumping has gone so far. I know it will get better once we get his basals straight. I still know we made the right decision to put him on the pump. Even though we're not correcting highs now, we will eventually. I'm still happy to be able to give such small amounts of insulin. I'll keep everyone posted.