Well, we kick off tonight! Matt will leave work at his usual time and pick Alex up from daycare, and I'll leave work a bit before 3 to pick Penny up from school, and then we'll stuff the kids in the car with their afternoon snacks and drive down to Norfolk to the CHKD hospital, where they hold a monthly class on insulin pumps, including a presentation covering the history and general functionality available along with some of the pros and cons, and then we'll get a chance to talk to some company reps and put our hands on the devices and ask questions.
We'll figure out what kind of pump we're interested in getting for Penny, and a nurse will fit Penny with an infusion set (that's the bit that goes under the skin, but not the actual tubing and such) so she can wear it for a few days and get a feel for what it will feel like. In the meantime, the endocrinologist's office will help us get started with the paperwork to submit to the insurance company to get approval for the device. (I understand this is much easier than it was even a few years ago, as insulin pumps are rapidly becoming the favored insulin delivery method for type 1 diabetics -- and a lot of insulin-dependent type 2s, as well.)
It's not a short road. Approval from the insurance company can take as long as six weeks, and then we've got a series of learning sessions to attend with the doctor's office. We'll have a how-to class for the infusion sets, and then Penny will wear the pump with just saline in it for a week or so to get used to that, and then they'll start it on insulin and we'll have a whole series of checkups every couple of weeks so they can adjust the basal ("slow drip") rates.
This is where I hope the pump will shine -- right now, her slow-release insulin delivers a more or less equal dose over a 24-hour period, but the thing is that she actually needs a bigger hit in the mornings than in the evenings, so once she's on the pump and we stop with the Lantus, we can adjust how much fast-acting insulin she gets depending on the time of day. And on a day-to-day basis, we can adjust it for special activities. Going swimming at summer camp? Slightly less insulin, please! Caught a cold that's making those blood sugars soar? Boost the insulin!
(This part is a little frightening, I admit. It took almost a year before Matt and I really started to feel comfortable adjusting her mealtime shots based on intangibles like "she's been running high for no apparent reason lately" and a good two years before we even wanted to consider messing with her long-acting insulin dosage without talking to the doctor first. So now we'll have another learning curve for adjusting her basal rates. But hopefully this one will be a little faster, since the principles are the same and we're just learning the technology.)
The pump will also make it easier on her for things like parties and family meals, where there tends to be a big space between dinner and dessert. Right now, we either dose her for dinner and dessert separately (two shots instead of one) or we try to guess at how much dessert she'll eat and then often have to give her a second shot anyway because we guessed wrong. Now we'll be able to input a dose when she puts something on her plate. Initial dose before dinner with what we expect she'll eat. And then if she ends up wanting a second piece of bread, or another cookie, or an extra scoop of ice cream, it's not a big deal -- just tell the pump to give her a little more insulin. We go to a picnic and she wants to graze across several hours instead of eating a single discreet meal -- not a big deal, just dose for what she eats as she eats it. (Well, it's not a big deal diabetes-wise. We'll still have to draw lines for weight control, obviously. But it means that when we feel okay relaxing the rules, we can relax a lot more than before.)
And it'll make it easier for her to go over to her friends' houses, especially for sleepovers. Once she's learned how to operate her pump, we can ask parents to measure and carb-count, and then she can call us to confirm her insulin dose before she tells the pump to deliver it. It's a little extra work -- but we won't have to ask anyone to consider giving her a shot, and that's the big stumbling block for people who've not done it before. And again, it makes grazing (as tends to happen at sleepovers) much less of a hassle.
As far as Penny's concerned, the big advantage is when school starts up again next year. She desperately wants to be able to eat the school lunches (...yeah, I know...) but they're insanely carby. Often more than twice as many carbs as in the lunch we pack her. (All-white bread, french fries, and syrup-packed fruits. Yay for nutrition, eh?) So I had promised her that when she went on the pump, we would try school lunches again and see if that helps keep her sugars from rocketing up into the stratosphere. I honestly don't expect it to work. A gajillion carbs is still a gajillion carbs, no matter how she's getting the insulin dose. But I did promise her we could give it a try. Maybe if she can dial in an initial insulin dose a full half-hour or 45 minutes before lunch, it won't hit her as hard -- we'll have to see how understanding and accommodating her 3rd-grade teacher is willing to be.
Depending on how fast Matt's insurance comes through with approval, we may or may not be on the pump in time for our trip to Cancun. I'm almost hoping not -- as mentioned, there's going to be a moderately steep learning curve on the technology, and I'm not sure I want to be climbing it while we're on vacation, completely disrupting our usual routines (especially in Mexico, where their nutrition labels are so different from ours). So unless the insurance okays Penny's pump more or less immediately and we can get over the first learning hump by the end of July, I may talk to the doctor about shuffling the schedule so that she's still on shots for Mexico.
Anyway, the journey begins tonight, and Penny is excited, and so am I.