New technology for Luke’s t1d pump

Jer and I are starting a small crowd funding campaign. Because sometimes it takes a village to deal with t1d, and we know how much our village loves our Luke.

Luke is privileged to have really good health insurance, and yet there are still some things insurance won’t cover at all. Luke’s new insulin pump technology is one of those things. Luke has a chance to wear the newest Omnipod-5 pump that has a new IQ technology. This new pump will communicate with Luke’s Continuous Glucose Monitor to increase or decrease his basal insulin without an adult imputing commands all the time. This doesn’t eliminate the need to give insulin boluses when he eats food, but it would help reduce the number of basal insulin adjustments he needs between meals. Luke’s basal insulin is the insulin drip he has all the time in order to help his body absorb energy. He needs more basal insulin when his blood sugar is high and less basal insulin when his sugar is low. I give Luke around 20 “injections” of insulin a day - i estimate that this new pump would do about half of those automatically for me.

Here are three practical examples (skip to the bottom if you’re not so much interested in the diabetic minutiae):

If Luke has certain meals, his blood sugar at night time can fluctuate wildly. Say, for example, Luke has high fat mac and cheese. The high fat content might make his blood sugar soar into the early hours of the morning even though he’s been given the right amount of insulin at dinner (but it doesn’t always do that. It depends on a bunch of factors including how much he exercised at the park or how hot it was outside that day.) In these high blood sugar instances, Jer and I usually set alarms throughout the night to give Luke extra insulin (but not too much because a night-time low is worse.) But this NEW pump would sense that Luke’s blood sugar is getting high and would give him extra insulin ON ITS OWN. Just the right amount. The pump LEARNS how much extra insulin to give Luke based on his blood sugar trends. So the longer you have this tech, the better controlled blood sugar can be. Better sugar control. Happier kid in the morning. More sleep for me. HALLELUJIAH.

A second example: if Luke is at risk of going too low, this new pump will SHUT OFF insulin delivery on its own. It is a new feature that would give us so much peace of mind. Say, for example, I have a babysitter come so jer and I can have a date. But maybe Luke misses us and that makes his blood sugar drop. Or maybe the babysitter takes him on his scooter and that makes his sugar drop. Currently, if we are away, Jer and I have our phones always ready so that if we see his sugar dropping, we can text the sitter. “Give Luke 5 fruit snacks. Poke his finger. Give half a cup of apple juice. Make him sit down.” Stressed date, stressed babysitter, always the potential for a life-or-death emergency (especially if the sitter doesn’t check her phone!) but having this technology would reduce the chance of Luke having a severe low - because the pump will stop giving luke insulin if it senses Luke’s blood sugar falling. This will help him be able to do normal kid things like VBS or swim lessons.

A third benefit of this new tech is that it would help make up for errant dosing. Errant dosing happens all the time because Luke is so young. This situation happened yesterday: I dosed Luke for a hot chocolate an hour before Luke was to drink it. (Yay on me! I remembered to pre-dose!) So when he got the hot chocolate, the insulin was already working on full blast. But after literally three sips, Luke dropped the cup. Hot chocolate everywhere. So what do I do? he was dosed for 20g of carbs that he could not drink (we were long gone from Starbucks by that point.) if he doesn’t consume 20g of carbs SOON, his blood sugar will crash. I’d like to not have a hypoglycemia seizure while we are running errands, thank you very much. I considered my options while the hot chocolate dropped on my shoes: I could give Luke candy from my purse (not ideal,) or I could turn off his basal insulin to try to make up for the extra insulin id given him for the hot chocolate. But for how long to I turn it off? That depends on insulin/carb rations and correction factors and insulin action time. All these calculation I’m trying to do as he’s crying over his spilled hot chocolate in the parking garage. Wouldn’t it be nice if I just had a pump that could adjust that basal insulin in real time as Luke’s sugar falls? This new pump can do that.

SO. This new tech doesn’t replace Luke’s broken pancreas. He still needs an adult to manage his insulin delivery when he eats any kind of food. But in between meals and snacks, it would help keep him from soaring too high or crashing too low. The hope is that it would help Luke remain “in range” much more without so much fiddling by his caregivers. The hope is also that it would help keep his blood sugar steady at school in the fall. If we get the technology now, it would have all summer to “learn” Luke’s trends. Luke’s time “in range” this past quarter was only 40% (and that’s with an obsessive mother who is present to insulin fiddle all day.) This new pump could really help his sugar be more stable (which, in turn, helps his long-term health ((eyes, heart, circulation, etc.)) and his short term health ((mood, fatigue, immunity, etc.)))

So we are going to put a Go Fund Me out into the world because this technology isn’t cheap. $500 to get started and then at minimum $300 a month (those are the estimates we got today.) So close to 4k for the year (on top of all of our other premiums and high deductibles that we always meet.) We are hoping to raise enough for just six months (crossing our fingers our insurance will have a change of heart by then.)

If you are willing to consider making a contribution to Luke’s new fancy tech fund, we would grateful and humbled. You’d be contributing to steadier blood sugar levels, much-needed safeguards, and a peace of mind for Jer and me. We’ve been Luke’s full-time pancreas since 2019 and it has been a relentless 3.5 years (jer literally hasn’t gotten a full-night’s sleep since January 31, 2019 because he has woken up every night since then at 2am to check Luke’s sugar.) This tech won’t fix t1d, but it might help take the edges off for us a little bit.

If you’ve got five bucks to spare, the donation link is here.