It's 10 p.m. The teenager has been home for an hour from band practice. She has showered and is thinking about going to bed. She checks her blood sugar in order to calibrate the Dexcom.
The parents watch warily from the couch while the teenager gets another test strip and rechecks her bg.
"WHAT IS GOING ON??? HOW IS THAT POSSIBLE??? HOW DID THAT HAPPEN???"
The teenager is distraught.
"Mom...can you help me do a site change so it goes faster? APPARENTLY I'M 485."
The mother rises wearily from the sofa, her plans for quiet time with her book followed by a good night's sleep dashed. She fetches a large glass of water for the daughter, in hopes of keeping ketones at bay.
"Yup. Drink this first. What happened do you think?"
"I DON'T KNOW!!!"
The teenager is grumpy, irrational and teary. Probably because of the blood sugar of 485. She gathers herself for a moment.
"I don't know... I was fine at dinner - 130 something. I don't remember Dexi alarming at band but it must have. It alarmed again a little while ago. But not that high. It's been iffy all day- it's like 10 days old - but I didn't know it was that far off and now I'm really high and I don't know WHY!"
The mother and teenager go off to the teenager's room to change the site. The chain of events leading up to the current situation is reviewed.
"I bolused dinner - I'm sure..." opens the pump's memory and double-checks "yup- and it wasn't a lot of carbs and you used the measuring cup. And then I just went UP! And I didn't eat anything at band- I just drank my water and I never had anything when I got home and now I'm SO HIGH FOR NO REASON."
When the site is removed the cannula is gunky, clearly clogged up. The mother thinks out loud.
"I don't think, in 13 years of pumping, you've had a pump site conk out that quickly. Usually they take a gradual turn for the worse, but this one seems to have suddenly and completely stopped working. That's the only logical explanation to go from 130 to almost 500 in 4 hours."
The teenager curls up on her bed, nursing her second pint of water. She is clearly miserable. She complains of a headache.
"... not just in one spot but like...my whole head...it just hurts...it's awful."
The mother initiates calming conversation … a friend's new puppy, a funny story someone posted on Facebook. Eventually, it's been 30 minutes since a correction dose of insulin was given. The teenager rechecks and is now just barely over 400. She gets up to brush her teeth and finish preparing for bed. The Dexcom alarms... FALLING! … and hope increases that the correction dose will work.
The teenager goes to bed. The mother gets to read her book, but for much longer than she'd intended, staying up until 12:30 a.m., when the blood sugar has dropped to 230-something.
The mother is awakened at 2 a.m. by the Dexcom alarm (which is now, incidentally, spot-on again) and gives the teenager some juice for a bg of 76.
The father gets up at 3:45 to give more juice for a bg of 68.
The family gets up in the morning. The teenager has a bg of 77. They are all tired. They are all grateful for the discovery of insulin. But moreso now for the discovery of caffeine. .
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.