Posted on September 1, 2014
Posted on September 1, 2014Many of our family and friends may recall that we attempted to fund raise for a CGM system about four years ago. We remain beyond grateful for the generous support of those who contributed at that time, helping us to raise about $1800 - nearly 1/2 the cost of the anticipated start up costs.
Without the Dexcom G4 continuous glucose monitor, Nikaela likely would not be with us today. Dex caught many stubborn and persistent lows in the wee hours of the morning, one, just in the nick of time to catch the onset of a hypoglycemic seizure. The what ifs remain heart stopping.
The technology isn't simple, cheap, nor does it last forever. In fact, the manufacturer warranty on the receiver is 12 months, and on the transmitter a mere six months. Technically speaking, the schedule demands that every 6 months we shell out $799, and every 12 months we attempt to cover an entire new system for $1199. The monthly cost of sensors? $450 / box of 4 when the dedcutible needs to be met, half that once we've done so. Ouch.
Right!We made our first system last nearly 24 months, but part of that meant inconsistent use. This in turn resulted in uncovered moments that really shouldhave been covered - thankfully luck, happenstance, and her guardian angel saw us through those times. With Niko in high school, we simply can't afford to play Diabetes Roulette anymore. Niko mustwear her CGM system 24/7 to help manage hypoglycemia and prevent seizures.
We thought about a diabetic alert dog. Not only do they run upwards of $10k, but they bring with them a loss of normalcy, the ability to manage her care subtly and without all the pomp and circumstance of a DAD.
And then there's the pump. Her minimed paradigm revel sported 13 motor failures in 18 months of pumping insulin. 13! That's thirteen unlucky opportunites to narrowly escape the unthinkable. So, with her endocrinologists help - we bit off the impossible. After experiencing an A1C increase of more than 1 point (a number highly correlated with heart disease, nerve and kidney damage, blindness and amputations), we bailed ship and hopped on board with Tandem for their tSlim pump. Wtih insurance our share runs $3000, and supplies for that alone top $300 / month.
We may feel a bit like we're on the financial Titanic right now, but in three months of tSlim use, her A1C dropped 0.8 points... that's almost unheard of. Niko plays nearly everything by the book, exercising tight control (beyond uncommon in teens), but the device clearly makes a difference
The sad truth? We can't keep it, these wonderful lifelines in the form of a medical devices that keep her alive. We can't keep the, unless we cover the payments, the supplies we've used, and order the next set of sites, cartridges, tubing and accessory supplies.
Not without help.
$5000 gets us not quite three months into the future, allows the past to catch up, and gives breathing space to cover all we haven't mentioned - insulin, test strips, ketone strips, meter costs, syringes, fast acting glucose, quarterly endo visits.
And yet, we know it's asking a lot. Which is why I've shared so much, why we will always remain 100% transparent with you, Niko's Champions.
We can't do it without You, and remain deeply indebted to your kindness and support!