Endocrinologist appointments are important touchstones in life with diabetes. It's a quarterly or tri-annual check-in at which months of diabetes are assessed as a whole.
We went into the city for my daughter's appointment yesterday.
There were no extraordinary clinical components to the visit except that she's now officially taller than me. Otherwise it was a run-of-the-mill appointment with conversations about adjusting basal rates and when to get lab work done again.
What distinguished this appointment for me was subtle but significant.
A few minutes into the conversation I noticed two things.
I had said nothing since greeting the doctor when we walked into his office.
I was sitting back in my chair while my daughter was on the front edge of the chair, leaning towards the doctor's desk, and talking with him about her diabetes.
She's been going to the endocrinologist since she before she could walk. Over the following 16 years, she's answered a few more questions and engaged in a little more conversation each visit, but I've always taken the lead. Until yesterday, when I'm pretty sure she did.
I had not asked her to be more involved, and I'm not even sure she was intentional about being such a big part of the conversation. I tend to think it was more of a natural progression. She's come a long way since I had to carry a diaper bag full of toys to entertain her through every appointment!
It was 6:45 p.m.
My daughter had gone straight from play practice to meet friends who were watching the end of a wrestling match in the high school gym. The plan was to go out for dinner afterwards.
I received a text:
'Dexi is dead and the meter won't turn on.'
We knew the Dexcom sensor was set to expire before the evening was out. But plan B was that she had her meter and would be fine using that instead.
But now she was not.
I grabbed two AAA batteries and let her know I would meet her at the front doors of the school.
'But what if it isn't the batteries?,' my daughter wisely replied.
So I also grabbed her spare pink one-touch mini meter. Since two dead meters don't equal a useful one, I popped in a test strip to check it, and, inevitably, its battery was dead. It takes one obscure flat battery. By the time I found a spare one of those, the contents of our 'diabetes box' were strewn across my daughter's floor and she was texting, 'Are you here yet?'
I pulled up to the doors, and she came out. She sat in the car with me and replaced the batteries in the regular meter. "Low meter batteries," it read.
"But I just put them in there- you brought new batteries, right?" I had, straight out of a container full of new batteries in the basement, I reassured her. Fortunately, the pink mini meter was working just fine so she was equipped for dinner.
She enjoyed her evening out and got home early enough to put in a new Dexcom sensor before bed.
The next morning I replaced the batteries in the usual meter one more time, and it worked.
Weird stuff can happen on any given Friday.
My daughter and I had dinner around 5:45. It was a regular meal. In fact it was leftovers, so it was the exact same thing she'd eaten earlier in the week. She bolused for the carbs with no correction since her blood sugar was in range.
She left at 6:25 for jazz band. I left at 7:10 for choir rehearsal. My husband, who we usually leave home alone on Thursday nights, was out late for a work event. By the time I pulled into my destination, I had a Dexcom alert on my phone. My daughter was low-ish. She was in the 60's. Which had happened the night before after dinner too, and she'd gotten kind of stuck there. There are a couple of days every month when sticky lows tend to occur, and I began to wonder if that was what was happening.
I texted her suggesting that, given the stickiness of last night's low, suspending the pumps's insulin delivery for a while might be a good idea.
By the time I got upstairs to my rehearsal I had another Dexcom alert and she was now in the 50's. She had not texted back. I resorted to texting, "Please tell me you are okay." Which at the time I felt might not be well received, but I was nervous enough not to care.
She replied that she was, that she would suspend insulin delivery on her pump, and that she'd had a juice box.
For the next 25 minutes I sang and texted and watched the Dexcom app and wished my husband was home, two blocks from my daughter, to run her up some more juice. The Dexcom alarms went from low to urgent low. I realized I'd stopped singing entirely.
By 7:55 my daughter had consumed everything in her bag and a sugar packet she'd scavenged from the band director's desk. Her blood sugar had dropped into the 40's.
I left rehearsal, clutching my phone, mysteriously muttering, "I need to go," and zipping out the door.
By the time I got in my car, 2.5 miles away from the high school, the Dexcom app read 'LOW.' That meant her blood sugar had dropped below 40.
When I texted my daughter I was leaving, she replied, 'Why? No. I'm fine. Go back. Don't Worry.'
That didn't work.
I did not drive the speed limit. I texted and drove. I Dexcomed and drove. And I prayed that my daughter would continue to text me and that all of the steps she'd taken so far would tide her over until I could help.
I ran in and out of my house to grab a juice bottle. I double-checked I still had glucagon in my purse from our Christmas trip.
She was back 'up' to 44.
I texted her I was on the way to the school with the juice.
'Well I can't leave.'
I left a bottle of Apple and Eve outside the band room door, hoping nobody would think it was anything other than a sealed bottle of apple juice, and asked her to let me know when she'd gotten it. I assumed she would come to her senses and sneak out and retrieve it quickly and surreptitiously. If she didn't I'd have to go back in and make a scene.
She'd retrieved and consumed it long before I'd driven the two blocks back home.
As I obsessively refreshed the Dexcom app while trying to distract myself with something on the Food Network, I saw the numbers begin to rise and I began to breathe.
When jazz band was over at 9, she drove home with a safe blood sugar of 90.
This wasn't a case of being unprepared. Maybe she was un-overprepared. But when leaving the house for two and a half hours, it's extraordinary to expect to be in a situation where you consume 45 grams of carb and suspend insulin delivery while your blood sugar continues to drop like a rock. At least after an accurately bolused dinner, and no unusual level of activity.
I'm grateful for whatever combination of grace, steps taken by us, and dumb luck saved us from a bigger disaster. From 7:30-9 last night was the most scared I've been of diabetes in years. We work so hard to keep things predictable and on an even keel but this was a sobering reminder that diabetes is, inherently, a dangerous disease.
Every diabetes scare we've had has resulted in steps towards preventing a repeat. Extra juice bottles will be squirreled away around my daughter's home-away-from-home in the band room and stage area of the high school. She'll stuff a few more airheads in her diabetes bag.
Unfortunately we know that there's always another unpredictable moment lurking, on any given Thursday.
On Christmas eve I had the unexpected opportunity to revisit the emergency room where my daughter was diagnosed with T1D.
I was the patient this time, having passed out on the kitchen floor of my in-laws' home first thing in the morning. It turns out that I probably should have been taking better care of the bronchitis that had been brewing over the preceding week instead of powering through Christmas prep, travel and time with family. The good news was that the experience was more surreal than serious and I'm making what promises to be a full recovery from both the bronchitis and the ribs I injured on the way down.
We lived two towns away from my in-laws when my daughter was diagnosed, so the drive to the hospital at dawn was familiar. Winding roads taken at a speed slightly over the limit, the beginning of daylight, anxiety and uncertainty. At the ER entrance there seemed to be an upgraded reception area, but the interior was about the same.
I was settled onto a gurney in an ER sized cubicle room and asked a hundred questions. A team of professionals got busy taking my vitals, taking some blood, and hooking me up to machines to continuously monitor my oxygen, blood pressure and heart. And all I could think about was 16 years and 3 days before, when I stood where my husband was standing. Out of the way, but in clear view, watching my daughter being hooked up to all of those things. And the interminable wait while they tried to get blood and insert an IV into her tiny dehydrated veins. I made out much better in that department.
Near the end of my 4 hour visit I was taken for a walk around the unit while hooked up to equipment to monitor my blood pressure and oxygen - making sure nothing dropped precipitously while I was upright and moving.
We passed the cubicle my daughter had been in. We saw the conference room where the doctor had taken us to discuss her condition. We walked over the place where I had stood with the helicopter EMT when she demanded insulin be started before transporting my daughter.
When I was released, I exited through the ER doors and we drove past the helipad from which my daughter and I had taken off, headed to the big children's' hospital in the city. We drove back to my in-laws' where my daughter had been hanging out with her grandfathers, playing cards, starting a crock-pot dinner and making and bolusing for her lunch.
Sixteen sweet things about the past sixteen years with T1D:
1. My daughter was diagnosed in time.
2. Christmas in a children's hospital is not an experience I'd wish on anyone and yet was magical in ways no other Christmas could be.
3. She and I both survived the toddler diabetes years.
4. We found other families with diabetes quickly.
5. We continue to have diabetes people in our lives: friendships we treasure both despite and because of their diabetes glue.
6. Ruby, the teddy bear with diabetes, lives with us and continues to be a fuzzy source of support.
7. A perfect and welcoming preschool was, essentially, in our backyard.
8. I found the diabetes online community; and then I got to start a blog and revisit my second grade goal of being a writer when I grew up.
9. The elementary school nurse was a treasure; and her diabetes care was great too.
10. Friends' parents invited my daughter over for playdates, however uncomfortable they may have been.
11.Lots of friends and family have gone out of their way (especially in those early pre-pump years) to loop us in on menu plans and eating schedules, making our visits easy.
12. Teachers have kept an extra eye out, no matter the other chaos in their classrooms.
13. Schools have found a way to make trips, special events and after-school activities work.
14. We've had amazing medical professionals on our team.
15. Math has always come easily for my daughter (and my math skills have greatly improved).
16. My daughter has grown into a responsible, self-confident and compassionate young woman.
Sixteen years ago today we had a tough day. There have been quite a few tough diabetes days every year since then. But, from time to time, it's worth counting our blessings.
We're switching insurance again.
Of all the employer-sponsored insurance plans offered for 2019, our current plan will now be three thousand dollars more expensive for the year than the least expensive one. The cheapest of the three, of course, is the one we've never had. We will sign up for what the company calls a 'gold plan,' and the system is tiered so that all insurers in the gold plan cover similar medical services, charge the same copays and have the same deductibles. The gold plan's coverage fits our high medical use and costs, and so is our best choice. But the per-paycheck cost is staggeringly different for each plan.
We did our homework, which was easier this year after lots of practice last year. The new insurer will cover all of our current doctors and drugs (though still not Novolog which stinks). It's possible we'll be able to escape Edgepark's grip since other DME providers are listed, but I'm not holding my breath since they are still one of the options. And while I generally subscribe to the adage, 'the devil you know is better than the devil you don't know,' $3000 is a lot of money.
The big risk, the one we can't get a clear answer on, is whether there will be hoops we have to jump through to get coverage for diabetes-related equipment. We delved pretty deep into the new insurer's website and made phone calls to learn about diabetes coverage and could not come away with a clear answer on whether we'd have to prove my daughter's need for an insulin pump and CGM before coverage is granted. Between reading and conversations, the possible answers range from 'you might need a letter of medical necessity from your doctor' (which is pretty standard), to needing to submit tons of documentation, to maybe they don't cover CGM unless it's some sort of dire situation.
I'm well aware that we're incredibly fortunate that we have access to insurance at all. That we've consistently had access to really good insurance, which for the most part covered what we needed with little to no hassle, is unusual. Maybe that's about to change, but after 16 years at this, I'm prepared to use every tool I now have up my sleeve to fight for what my daughter needs. Hopefully we'll repurpose that $3000 wisely. If need be we'll spend it on things that aren't covered. Or on a little getaway to help me recover from a year of insurance fights.
Our household diabetes policy (yours may vary) has been for my daughter to take on diabetes responsibilities as she feels ready. The understanding has been that while we do not expect to live in her college dorm with her, she should not feel rushed. Every diabetes task will ultimately be hers, for the foreseeable future. For now, we're here to help.
Slowly but surely over the past sixteen years, one or two things at a time, my daughter has taken over her own care: blood sugar checks, carb counting, then insulin pump site changes, and so many more in between.
The Dexcom was at the center of the two lingering exceptions.
Because of the awkwardness of the G4's insertion device, I continued to assist with putting in a new sensor every 7 or so days. She did it once, to prove to herself that she could in case it failed while she was traveling without me, but it was super-awkward and I was happy to keep helping. The insertion device for the G6 is a much easier to handle one-handed push-button device. My daughter inserted the first and second ones with no problem. It's easy and nearly painless, she reports, though the spring-loaded insertion contraption is alarmingly loud.
The second area of responsibility we've recently relinquished (to some extent) is overnight diabetes care. Until the G6 arrived, the Dexcom receiver remained on a parent's bedside table each night. We got up to deal with its alarms while my daughter slept, or roused herself briefly for juice. That routine, of course, followed years of setting 2 a.m. alarms for fingerstick checks.
The new plan is that my daughter keeps her phone, and the Dexcom receiver, on her bedside so that she can awaken to deal with the alarms. She started with just the phone, but the Dexcom app alarms were not loud enough to consistently wake her (though they woke both of her parents in the next room). She's added the receiver, which she keeps on the bed with her to feel its vibrations, and so that two alarms are blaring at once. She still does not consistently wake to the alarms, while I, of course, still do. But things are improving. She did wake up and treat a low this week without my hearing anything, which was good news. And the alarms are diminishing after the Thanksgiving leftovers are gone, and as we use the Dexcom data to work on keeping numbers more consistently in range...which is the ultimate goal.
It's bittersweet to watch my kid take on these responsibilities. Yes- by all rights they're hers to deal with and it's important for her to practice with the safety net of mom and dad around to help. But how I wish she didn't have to.