I chaperoned a five day, four night, 120 kid high school field trip last month.
While there was a school nurse traveling with the group, and while my kid does most of her diabetes management alone at this point, I wasn't completely comfortable letting her take this trip on her own. And, perhaps more importantly, she didn't feel completely comfortable either. Our concerns included:
-The farthest my kid has ever travelled for a sleepover is 5 blocks from home. She's never been away for more than about 18 hours. Going from that level of overnight diabetes self-care to a 4 night trip over a thousand miles from home felt to both of us like way too big of a leap.
-The trip involved air travel. My arrival for an emergency (gastrointestinal illness, first-ever glucagon use, other unforeseeable situation) would be both significantly delayed and extraordinarily expensive. Also, while I'm sure someone could have walked her through airport security, the TSA checkpoint is a minefield for people with diabetes and we were concerned about her potential need for a strong advocate should she get pulled aside.
-The trip involved five days of dining out. My daughter has never managed more than two restaurant meals in a row on her own and was nervous about not having someone there to eyeball the carb counts with her and/or help her pick up the pieces after a bad guess.
-The trip's itinerary was intense. And the itinerary didn't lie. My Fitbit tells me I walked 10 miles a day with lots of 'active' time. We rose by 6:30, earlier some days, and the kids were not required to be in their rooms until 11 p.m. There were regular transitions from place to place with few moments to stop and regroup. Amusement park rides, swimming pools, and several performances including marching in a parade were all on the agenda. We were concerned that the level of activity combined with the lack of time to stop and think about diabetes could lead to problems significant enough to slow my kid down or derail her participation. It felt important to have someone there both to remind and support her as she took the time to care for her diabetes, and to stay behind with her should she need to stop and wait out a low or trouble-shoot a high.
We decided that sending her on this trip without a parent was too much to ask of my child, the nurse, and the staff. Also, spending 5 days flipping between the Dexcom app and the 'Find My Friends' app on my phone while simultaneously trying to remember to breathe didn't really appeal. After a couple of conversations with the teacher in charge of the trip I was, despite a certain level of anxiety about chaperoning a group of high school kids, grateful to be given the opportunity to go.
On the trip I performed a variety of general chaperone duties, got to know some great kids and adults, and got to be part of a unique adventure. As far as my mom-of-a-kid-with-diabetes role, I mostly watched from a safe distance while my kid did her own thing. She talked to the TSA people on her own. She kept the Dexcom with her overnight and woke to respond to its alarms. She did her own site change in her hotel room. She counted her own carbs, asked questions at restaurants, and, on more than one occasion, sent back sweetened iced tea for the unsweetened she'd ordered. She made decisions about dosing and snacking based on her activity level. She carried her own supplies. Her blood sugars weren't perfect, but given the food and schedule they were good enough. She spent the days with her friends and I spent them with the other chaperones.
As it turned out my presence was more of a convenience than a necessity. I provided some in-line coaching and moral support as we went through airport security. I handed her extra water to combat the effect of heat on her blood sugars. I helped her with an unanticipated Dexcom sensor change when the one we put in the day before the trip inexplicably conked out. I met her at a water flume ride to hold her diabetes stuff so it didn't get soaked. I carried the glucagon, a spare infusion set and some extra glucose tabs, always close enough to jump in to assist if needed. When the large group divided and headed to different destinations I stuck with my kid, making the division of chaperones a non-issue. My presence allowed the nurse traveling with us to focus on other kids without worrying about keeping track of mine.
But now that I've seen how well she handled most everything without my help, I'm excited for her to have an opportunity to travel without me. Just maybe on a trip that's a little closer, and a little slower-paced.
As my daughter looked through her Easter basket yesterday she remarked,
"My friends all get chocolate bunnies from CVS. I'm glad mine is always homemade dark chocolate. It makes it so much more worth eating it."
The Easter Bunny's reasoning (as far as I understand it, though we've never met) is that if your basket is not going to be filled to the brim with candy, the candy that's in there should be worth eating... 'bolus-worthy' as it were.
So nestled among a few silly Easter toys, a package of baseball cards, a couple of EOS products, an i-tunes gift card and some marigold seeds there's always a really good chocolate rabbit the Easter Bunny has picked up at a local candy store.
My daughter got a new pump a couple of weeks ago. It's her fourth Animas pump.
We know there are other options out there. The new Medtronic pump with it's built-in glucose-responsive CGM technology is by far the closest to the ultimate goal of a closed-loop system. The slim and durable Tandem has some nice user-friendly touchscreen and Bluetooth features. The tubeless Omnipod would be convenient with exercise clothes and on the beach.
We briefly considered all of the options.
In the end we decided not to undertake the challenge of learning to use a whole new insulin delivery system. We decided to stick with what we know.
My daughter has been attached to an Animas pump since fall 2004, 24 hours a day, seven days a week. It's as close to a part of her body as an electronic device can be. Replacing it with a new brand of pump would, we think, require an extraordinary amount of learning, thinking and adjustment. Which seems unnecessary since we're perfectly happy with the results we've had.
We use several of Animas' unique features to our advantage. My kid has very low basal rates during certain parts of the day, so the tiny basal adjustment increments the pump offers are great for really fine-tuning her doses. The meter remote is a huge quality-of-life feature because it allows my daughter to program a bolus without extracting her pump from underneath a dress or a marching band uniform. We have a good feel for the current insulin-on-board set-up, and for how the bolus calculator takes her blood sugar into account so that we can easily factor that knowledge into dosing decisions. We've rarely had problems with our pumps but when we have, we've consistently had good experiences with Animas' customer service department. After 12 years of the same pump I'm able to do site changes, battery swaps, and cartridge changes under almost any circumstances. My kid can program a bolus and have a conversation or keep an eye on the baseball game at the same time. Using this pump has become second nature.
As I started to write about yesterday's endocrinologist visit the words felt familiar. I looked back and found a post (which you can read below) from 2013. The only difference between the old story and yesterday's visit was the added visual aid of a Dexcom graph which showed that the average range of blood sugars was about 40 points higher than we'd like it to be. "This whole graph just needs to move down an inch or two," was our doctor's assessment of the issue. The rest of the conversation was about the same as this one four years ago:
We visited the endocrinologist this week.
In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs. I try to identify any major issues we need to discuss. Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones. I do this so that we can spend our endocrinologist time on issues I really need help with.
This time I tried to think about it. I really tried to weed through all of those numbers and find the places we needed to change things. I didn't know where to begin. I gave up. It turns out my confusion was warranted. The doctor's initial impression?
"She needs more insulin...like most of the day."
Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news. It wasn't surprising either.
Many things had changed since our last visit. She'd added height. She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.
So we added insulin to almost every basal rate. We added insulin to almost every carb ratio. We added insulin to the correction factor.
We've been doing diabetes for ten and a half years. I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting. I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.
Yet once in a while, particularly with a growing child with diabetes, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.' Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.
I don't imagine all of yesterday's adjustments will work perfectly. We'll be following up with more tweaking in the weeks to come. But I'm grateful for yesterday's major overhaul so that we can get back on track, an inch or two lower on that Dexcom graph.