My daughter's Dexcom G4 sometimes chooses to stop 'sharing' these days, making its receiver the only source of information. When this happens, as it did this week, I try to take a quick peek at the receiver once in a while, just in case we need to talk about tweaks in the basals, carb ratios, correction factors and such.
I looked at the receiver this morning - it was on the table after breakfast - and yesterday morning showed a spike, reaching the top of the graph, and hanging there for an hour or so before coming back down to a reasonable range by noonish.
My initial instinct was to ask something along the lines of, 'What the heck happened yesterday???"
Then I realized three things:
1. I already knew what happened yesterday. Her grade had a delayed opening because of standardized testing at the high school. She had been out to breakfast with friends and she ate eggs and toast and potatoes- which was a better choice than pancakes - but she clearly either under-guessed on the potatoes or forgot to bolus until too late.
2. The evidence showed that she'd picked up on her mistake, corrected her blood sugar, and gotten herself back in range by lunch. She had solved the problem by herself.
3. Nit-picking is counterproductive. She'd just get defensive if I brought it up, no matter how much I tried to turn the conversation towards 'all's well that ends well.'
So I didn't ask.
We currently have more than one family in our lives with a recently diagnosed blood-sugar-challenged person. While we're hoping this isn't becoming a trend, I'm working on my own initial reaction conversation, and reflecting on some I had 15 or so years ago.
We were fortunate to be hooked up with a local group of diabetes parents shortly after my daughter's diagnosis. When I called for details about their meetings, the group's facilitator - both a CDE and a diabetes mom herself - stayed on the phone for almost an hour, offering support and encouragement, with lots of, "slowly but surely it'll get easier," and "it sounds like you're doing well, considering how little she is and all you've been through," and "I'll bring you some resources when you come to support group." She then asked if she could have a member of the group call me since this member's daughter had been diagnosed at about the same age as mine. The phone rang a few days later.
"Oh... I'm so sorry this is happening to you," the well-meaning mom began, "Having diabetes is terrible. It's the hardest thing we've ever done."
We had other conversations with fellow diabetes families over those first few months, some from that support group and some from other parts of our lives, but I think those two interactions mark the extreme opposite answers to the question, "What should I say to the newly diagnosed?" Should I assume they're in a place of despair, or should I begin with hope?
Talking with the "diabetes is terrible" mom wasn't all bad. Simply chatting with someone with similar experiences was helpful. But I was left wondering why, 3 weeks in, I seemed to have a better level of acceptance of my new normal than she did after a few years.
So in my interactions, even on days when I'm feeling like diabetes is particularly terrible, I've decided to aim for encouragement: offering and answering questions, listening, and providing information or resources if I can. If the conversation flows towards the terrible parts, I'm not opposed to supportive commiserating, but want the end message to be, "but we survived those first months, we're surviving now, and you will to."
I don't think there's anything much more helpful than a real live person saying, "I've been in your shoes. I'm still standing, and even thriving. It's going to be okay, and I'm here to help."
A poem written especially for moms of young kids with diabetes:
Not flowers, nor chocolate - not even fine tea!
What I want is a break from the numbers, you see.
For three sixty four they've been swirling around
'Til I fear on some days that my brains will be drowned.
So this Sunday for Mothers, I ask for a rest
From basal and bolus, from 'What are you- test!'
From site change and carb counts, from dexcoms that blare,
Insurance and phone calls and 'the juice boxes are there.'
So Sunday at lunch and the walk by the lake,
I ask that from d-stuff I get a quick break.
I'll be back on Monday, raring to go,
To support my sweet hero in her diabetes show.
Happy National Nurse's Week!
My daughter has, for over 10 years, almost always enjoyed going to the nurse's office.
The minutes she was late for lunch in elementary and middle school were hard, and she never enjoys being low or needing a site change. But there are upsides to those nurse visits:
There's often something interesting going on in the office. An overheard phone call to a parent who doesn't want to pick up a sick kid. Or a bizarre gym injury. Or an update on the current plague, be it flu or lice or a lingering cold.
There's a kind, interested adult there. When the office is quiet, there's conversation. Our school nurses have known more about my daughter than most of her teachers and even some of her friends. And vice-versa. While killing the time it takes for a low blood sugar to come up they talk about family, vacations, restaurants, afterschool activities and more.
Teachers and other staff stop by. My daughter has overheard, and often been included in, conversations amongst school staff. It's pretty interesting to hear the 'grown-ups' talk. Some nurse's offices are adjacent to the main office, providing yet another interesting source of conversation and information.
There's air conditioning. This is no small plus in September or June around here. On elementary school field day, or as an escape from the south-facing third floor middle school classroom, a low-ish blood sugar was a free ticket to relief.
I'm incredibly grateful for the nurses who've sat in those offices over the years. Being concerned about and dealing with my child's medical needs are line items in their job descriptions. The relationships they've built with her, and the extra kindnesses along the way have been above and beyond.
Thank you, this Nurse's Week, to all the school nurses who make their offices a safe, pleasant and even desirable place for their kids with diabetes.
Fifteen years ago, when my daughter was first diagnosed with diabetes, we were given a handful of paper prescriptions. I drove to the local pharmacy near our house which, conveniently, doubled as a Hallmark store. I handed over the prescriptions and went home with two kinds of insulin, including one which had been diluted to make her baby-sized doses possible. I also went home with test strips, lancets, syringes and glucagon. At regular intervals I returned to the pharmacy, paid a reasonable copay, and received more supplies. Sometimes I was also able to pick up a birthday card or a baby gift while I was there.
It sounds like a fairy tale now. The only thing I still obtain at a brick-and-mortar pharmacy is insulin, and I fear those days are numbered.
I fail to understand how the current system could possibly be more cost-effective...or better in any other way for that matter.
The layers of bureaucracy which have been added in the interests of keeping costs down can't really be doing so, can they?
Our endocrinology office now has staff members who answer the office's 'prescription hotline,' speaking, emailing and faxing all day with patients, pharmacies and insurers.
Our health insurer now pays a third party case management company to manage our prescription and durable medical equipment (pump, dexcom, etc.) supply needs. That company then contacts the people at supply distribution companies who then process our order. Both the prescription case management company and the supply shipping company call, email and snail mail us, our insurer, and the aforementioned 'prescription hotline' people regularly with questions, updates and statements.
Then FedEx, UPS or the USPS is paid to deliver our supplies. They're also paid to return wrong orders, or malfunctioning equipment.
How does any bulk purchasing discount not get balanced out by all of these additional expenses?
It's also definitely less efficient, taking days if not weeks to fill prescriptions when it used to be possible to pick it all up on the way home. Or, at worst, kill the 20 minute wait picking out a birthday card or browsing the toy department.
And the room for error has increased exponentially. When I pick up a prescription from CVS, I peek in the bag before I walk away from the counter. If there's a problem it's fixed immediately. Meanwhile, our initial order from Edgepark, containing 2 wrong items, required 3 phone calls, a 48 hour wait for a replacement items, a 2 week wait for a return label, and a trip to the post office. And I'm not sure the billing is straightened out yet.
There's so much wrong with the current healthcare marketplace that this is just the tip of the iceberg. At the same time it serves as a lens through which to view the layers of bureaucracy which are adding expense and frustration for all of the players in the healthcare system.
While it wasn't always convenient to go to the pharmacy, especially with a toddler in tow, it was most certainly better than the rigmarole we go through now.
"The owl bag is in the orange toolbox," the text read.
Nope. This isn't where I reveal that we're part of an intriguing spy ring.
The owl bag is, in fact, a small insulated cosmetic bag which currently holds a glucagon kit, one-touch mini meter, strips, a lancet and a pouch of glucose gel.
The orange tool box is a standard-sized portable toolbox which holds a vast array of items useful for repairing band instruments. Screwdrivers of all sizes with screws to fit everything from a piccolo to a marimba, pliers and wires, glue and assorted tape, reeds, mouthpieces and so much more are all housed in this very heavy toolbox which travels to the field for every rehearsal and with the band for every game, competition and concert.
We turned over the owl bag before summer band rehearsals began for freshman year. Over the course of that first year, it could be found in the director's desk drawer, in his messenger bag and on the sidelines of the football field. Last summer, at the start of summer rehearsals, I received the above cryptic text from my daughter. The band director, wisely we think, decided that if the owl bag was always in the orange toolbox, then it would always be in close proximity to the band.
We removed the owl bag from the toolbox and handed it over to the nurse who went on the recent overnight music department trip. It held just the right collection of things the nurse needed to carry. The day the kids returned to school post-trip, I was reassured by a mid-day text from my daughter:
"The owl bag is back in the orange toolbox."