Why Deciding to Use an Insulin Pump is Emotional
'To pump or not?' ... it is a question fraught with possibilities, complexities and drawbacks. My son is scheduled to start a saline trial for a pump this Friday. Since nearly day one of his diagnosis, we've been asked whether or not he is on, or considering going on, the pump. As a mother of a son with Type 1, the pump question has caused very mixed emotions in me.
First off, when I hear story after story of how insulin pump therapy has changed people's lives, excitement and hope fill me. I cannot believe how far technology has come in the twenty years since my father was diagnosed with Type 2 Diabetes. Having medical device technology reach the point that an insulin pump can replace age-old syringes seems like science fiction. Two, I'm infatuated by the idea that my son will have a tighter control on his insulin dosing, which in turn calms my worries of the long-term diabetic complications that give me nightmares.
My discussion with Jen Alexander opened my eyes to the freedom that the pump can offer a person with diabetes. Jen is the open water swimmer who set the world record swimming a double crossing of the North Umberland Strait in Canada. She manages her lengthy, usually cold, swims using a waterproof pump.
My son on the other hand? He flip-flopped on the idea from the get-go about going on the pump ... and still does. Why shouldn't he? He has a routine he is used to-using an insulin pen-and more importantly, it is a routine that he is comfortable with. His blood glucose monitoring, and control, which he spearheads, remain pretty good. In his mind, why should he rock the boat and introduce a new form of insulin therapy when everything seems to be going so well?
Yet, when he has a BG reading up over 250, he wavers. Then comes phys ed class and lots of sprints around the track and he goes low (he is now on a Lantus basal/bolus regiment), which he abhors doing at school, and he's ready to go onto the pump.
But then he hesitates, considering the drawbacks of being physically tethered to a device. He wonders: What if people see it? Ask me about it? This causes him more concern than needing to find the space and time to inject himself four times each day.
My son already has done lots of research on pumps; why they can be good and bad, and which one he may want. He talked to other teenagers at the Children With Diabetes Conference this past July about their choices, he's asked others he's met who also have Type 1, he's attended workshops and a vendor night through our local Diabetes Center, and he's posted questions and discussion threads on a few of the teen-related online boards.
He's even tracked his BG numbers, food intake complete with carb counts and exercise regiment for a solid month. Pretty impressive for a teenager who never remembers to hang up his bath towel.
I, too, admit that I have my concerns. I stress over the issues that have physical implications, like skin infections at the infusion site or kinking in the tubes. I've heard of a few stories of kids ending up in the hospital in DKA because of a twisted tube. With the pump, our Lantus safety net is gone with regard to highs. Of course though, gone too, will be those pesky lows. I've talked to people who've not had success with the pump and that although they believe in the power of the insulin pump technology it just didn't help them to control their blood glucose.
Then there is the learning curve. To this I admonish myself as being lazy or maybe simply avoiding something I don't fully understand. But frankly, I'm intimidated. I have tried for months to learn the capabilities and applications of my iPhone for work, and have barely scratched the surface. Once I have an app down, it's been updated. I'm not a technology dolt; I just don't take time to learn. I wonder: will the same thing happen when my son is using insulin pump therapy? And if I fall behind on learning the technology, will my son suffer?
My worries are typical of many parents and the decisions that so often affect their children's lives long-term: who is the one that is really making the decision? What if it turns out to be a horribly wrong decision? What if we don't make a move on this potentially life-changing opportunity and it's an opportunity we'll all regret not taking advantage of? What if he opts not to start the pump therapy and when he's ready, we no longer have our current (very good) health insurance coverage and we cannot afford a pump for him?
My teenager tells me not to stress -- it is, after all is said and done, his decision. He is the one who has to live with diabetes, manage diabetes day after day. He must be the one who makes the decision to pump or not to pump.
And that it is: his decision.
But if I don't worry, and don't try to interject my opinion, what else am I to do?
I am, after all, his mother.