J.J.'s been on the pump for one week. These are my impressions of this first week.
The week began a little stormy. Having NO experience, LITTLE knowledge, and EVEN LESS sleep made the first few days stressful.
His basal doses in the beginning ended up being way to low, especially at night. After 24 hours we said, "Forget this, we're increasing his basal." The increase at night helped some, but it was still clear he wasn't getting enough. After a couple more tweaks we are at a pretty good range. Not optimal, but at least at a level where we aren't having to bolus every hour all night long to keep him from going to the moon.
The first set change was a little nerve wracking. Having no help, a household full of active children, and forgetting to set out the insulin beforehand made it somewhat difficult. I spent some time on the Children with Diabetes Forums and the Type1parents Forum reading their tips and tricks for site changes. It helped, but it's only knowledge.....the experience is what I needed. I shook like I did the first time. It went in well, however, and seemed to give him the insulin he needed. PHEW!!
The first set change was under my belt....the next one would prove much easier. No shaking, no nothing. J.J., however, did wake up to the fact that it is painful. He fussed and fussed and said he didn't want to do the pump anymore. I asked, "You would rather go back to doing something like this 4-6 times a day instead of once every 2-3 days?" That kept him quiet. I'm sure we'll get the fussing for the set changes. We got them for the shots, but if we sympathize yet remain firm in our resolve, he gets over it quickly and begins playing seconds after it's in.
We've had issues this week with him peeing on the pump. Thankfully the pumps are somewhat waterproof, but we can't get him to remember to move it out of the way. I'll leave Dad to help in that training!!
After changing the reservoir this morning it was apparent that J.J. will need more than one vial of insulin a month. We're having a difficult time trying to figure out how that is so, since we were throwing away half vials on shots. But he's taking in an average of 13 units of insulin a day, and the vials are only for 100 units. I called our CDE this morning and left a message. It will be interesting to see how much insulin she ends up prescribing for him on a monthly basis.
The CDE feel's comfortable with our ability to manage and tweak the pump on our own. We rarely wait to talk to them about much, so when they do call to check up and we've made adjustments that sound like what they would've done, I think they're going to let us be. Not a big deal....I'm not much for hand holding. We will attend another class next week to get even more information on using some of the pumps extended features. I also ordered "Pumping Insulin" by John Walsh. Hopefully with those resources we'll be able to use the pump to it's fullest potential.
So far we are liking the pump experience. It's nice to have precision....but weird to actually have the capability. On shots we would figure he needed 2.7 units, but only be able to dose a 2.5. It's also nice to be able to give him the insulin he needs at various times of the day. We couldn't do that with shots. So far we have only let him have an unscheduled snack once or twice because we are still figuring out basals and meal bolus's, but it's been nice to have the ability to do that. It's also wonderful to be able to dose BEFORE he eats.....a little different than my routine, but I'm getting used to it.
So there you go......our first week on the pump. A little roller coaster ride, but we're coasting a bit now. We have much to learn and experience to be sure.