I said I'd post every day for a week, well, the week is up. I may take a little break after
this. It depends on if I feel the need to write or not. Sometimes it helps to get everything out. This week of posting was meant to help other parents that might be considering a pump. To let them know what it's like, but I'm afraid Riley's a poor example of the first week on the pump. We've had so many set problems and I know that's not normal. It's normal to have one occasionally, but we've been changing sets every day, sometimes twice a day, like yesterday.
Yesterday started out with high numbers and a clogged set. Things went pretty well after that, except a low after supper. I think his sensitivity factor is too low. I wanted to set it at 300, but the endo. wanted it at 250. I know it sounds crazy, but he's had 1/2 unit of insulin drop his sugar that much before. ( For my family and others that may not know, the sensitivity factor is how much 1 unit of insulin drops his sugars. So , now the pump says one unit of insulin drops his sugar 250 points. So, when his sugar is up it takes that into account when it suggests how much insulin to give.) I'll tell you why I think his ISF is too low. Last night at supper his sugar was 307. The pump suggested .6 units for correction and .7 for his 35g carbs. So, a total of 1.1. That's what I gave him, and 1 1/2 hours later his sugar was 66. This is not an anomaly. It's happened several times. He only gets corrections with meals. I think his ISF is off and not his carb ratio, because if he eats and doesn't need a correction his sugars don't drop like that.
Dr. M called last night to see how things went yesterday. I told her we had to change the set again. She apologized and said she was sorry we'd had such a bad first week and that hopefully it will get better after we get the new sets. She has ordered the 6mm Insets. So, I guess that's what we will be trying next. We got a sample inset (9mm) with his pump. I got that out last night and played with it to get a feel for it. I wasn't trained how to use it, but I think I've figured out how to use it now. It doesn't seem too complicated. Before I use one, I'm going to call the educator and have her talk me through it, so I do it right. I'm thinking you prime the tube just like the other ones, and you load the spring, remove the adhesive backing, place it on his skin, and release the spring. I also think you don't pinch up the skin like you do with the comfort. I don't have the pamphlet that came with it, so I don't know how much it takes to fill the canula, but I'm sure they'll send one with the new supplies.
So, that's where we stand now. I'm not sure when the sets might show up. I think they were ordered on Wednesday night, but it may have been yesterday when they were ordered. So far, his other set is doing OK and if it continues to do OK, I will leave it in until Sunday when it is due to be changed. But, I'd like to have the new sets here so if it does mess up, I can use them.
His sugars did well last night. 177 at bedtime, then, 124, 114 (I gave him a peanut butter cracker that he didn't need), and then 215. He was 153 pre-breakfast this morning. I still haven't gotten into a pumping mindset yet. It's still scary for me to see a sugar of 114 at 4 in the morning. That used to be way too low for him, but I have to realize his basal is lower now at night than it used to be. I'm getting better. Last time I gave him 2 crackers. Maybe tonight, I'll be brave and won't give him anything. But, of course, that means I'll check his sugar more often. I did try not giving him anything one night. His sugars were 150, 127,120, and then 75. I guess that 75 wasn't too terrible for a pre-breakfast sugar. I want it 80-140, but 75 is close enough.
Keep your fingers crossed that this set will last through today. I will consider it a huge victory if it does.