Stuff Happens

 

Today's the first day of Diabetes Blog Week! (!!!)

Today's topic is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

 

I try to maintain a family-friendly blog here, so I'll put it this way: Diabetes stuff happens. Like sitting down to lunch only to discover there's only a unit of insulin left in the pump. Or being so low all day that you run out of glucose tabs. Or discovering the meter battery is dead while you're on a sleepover. The stuff is not always preventable. So we try to be prepared for as many eventualities as possible.

 

At home or at school there are plenty of supplies to address any diabetes disaster. When we're out but close to home I can run over to a friend's house with a battery or we can stop home between errands for a new infusion set if we need to.

 

But sometimes we travel further afield. For day trips, excursions while on vacation and school field trips, we throw this Ziploc bag (or a facsimile thereof from school) in the backpack:

 

THE CONTENTS INCLUDE:

A spare vial of test strips

Spare batteries for both the meter and the pump

Glucagon (even though there's usually one in my purse)

The current open vial of insulin

Long-acting insulin for pump failure - at least if we'll be more than an hour or so away

A couple of syringes

Everything needed for a site change including 2 insertion sets

Dexcom tape
Extra glucose tabs

 

 

If it's hot, we put the contents in this insulated zipper bag.

 

It's a lot to carry around. We usually also carry extra juice boxes and water. But it beats the possibility of having to return home (or to our home away from home) if the infusion set rips out, or the pump battery dies, or somebody accidentally dumps all the test strips on the ground.

 

Nobody ever said having diabetes was predictable. Stuff happens. That stuff is less likely to stop us if we're prepared for it.

Want to read more posts about the Unexpected? Click here!
 



The Insulin is Insulin Conversations

At last month's endo appointment we needed just one prescription: Lantus to have on hand in case of pump failure.  Our doctor sent the Lantus prescription directly to our local CVS through the diabetes center's online ordering system, just as he's done every time our emergency vial has expired.

By the time we got home there was a voice mail from a pharmacist. The Lantus was no longer covered by our insurance. I needed to return the call to talk about next steps.

When I called back, a pharmacist walked me through possible substitutions. I explained that I wasn't terribly picky as long as there was something in the fridge which would keep my kid alive for a day or two until a new pump arrived. We decided that whatever the doctor ordered to substitute would be fine with me and that if there were choices I'd take the one with the lowest copay.

We left for spring break the next day expecting a voice mail upon our return telling us that the prescription was ready for pickup. There wasn't one, so I called.

"Yes- I see that the Lantus wasn't covered but that the Novalog was picked up as a substitution."

"Um...no. The Novalog was a different prescription which we refilled around the same time. Novalog isn't a substitution for Lantus- they're different kinds of insulin. The pharmacist I spoke to was going to call the doctor to request an appropriate substitute."

"Oh- I'll give the message to the pharmacist so that he can call later today."

Two days later, still having received no notification that the prescription was ready, I called to follow up.

"Yes I see that the Lantus wasn't covered, but the Novalog was the substitute for the Lantus, right?"

"No. It wasn't. And also, that's not possible. They do different things."

Again, "I'll have the pharmacist call the doctor's office."

I responded with something only slightly nicer than, "Don't make me have to call you again."

Two days later I called again and was transferred to the actual pharmacist.

"We've been calling the doctor since yesterday afternoon and haven't been able to reach anyone."

"It's a huge clinic, not a private practice. That seems highly unusual."

"Yes, but it just rings and rings."

We verified that they had the correct number, which they did, and then the pharmacist asked if I would call instead.

So I did. I called the office, where I was quickly connected to someone who answers the 'prescription line.'

I recited my tale of woe and provided the necessary details about the pharmacy.

An hour or so later I received a call back from the diabetes center.

"Hi- I'm calling you back about the Lantus. You have the Novalog, right?"

"Yes- that's not the problem."

"So then what is it that you need?"

"An alternative for the Lantus."

"But you have the Novalog."

"Yes- and they're two different things...right?" I was right ... wasn't I? 

"We have the Novalog which is in my daughter's pump- the fast acting insulin she uses 24/7. Then we keep Lantus, the 24 hour insulin, on hand in case the pump fails."

"Well...yes. I don't know what the pharmacist was saying then. Let me call him back."

An hour or so later the woman from our doctor's office called back and said that doctor's orders for Basaglar insulin had been sent over to our CVS. I received confirmation of this new order through the office's online patient portal.

Another weekend passed with no news from CVS, so on Monday I called and inquired about the status of my daughter's Basaglar insulin order.

"Yes. We are working on that."

"You're working on it?"

"Yes. Well. Let me see if we have that in stock." There was a brief interlude of top volume static-y piano music and then, "Yes. I have it here. We will have it for you this afternoon."

And, believe it or not, they did. Except it was in the form of pens, which we've never used.






 

 

So now I have to call to get insulin pen needles.

 

Meanwhile, a quick google search tells me that if push comes to shove I can draw the insulin out of the pen with a regular syringe. Which is reassuring, since who knows how long the next step will take.

 

 

The Trip

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.

Bolus-worthy Bunny



 

 

 

 

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.

 





What We Know

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.

 

In four years, or maybe sooner, our decision making process may be different. There could be some amazing new technology on the market by then, like an honest-to-goodness artificial pancreas or at least something much, much closer than the current options. For that we would certainly switch brands and learn something completely new. Until then we'll stick with what we know.

Endo Day

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.

Different Every Time

Airport security experiences are like snowflakes- they're different every time. Fortunately this week's travel was different in a good way.

Our journey began at a huge, busy international airport.

My daughter's boarding pass was marked pre-check. The procedure was shoes on, metal detector only. She approached metal detector and said to the TSA agent, "I'm wearing an insulin pump which could set this off."

"Try it," the agent replied.

My kid walked through metal detector, and did not set it off. She looked at the agent who gave a friendly wave. "Have a good trip!"

On the way home, at a smaller airport, the procedure was different:

Our boarding passes were, once again,  marked pre-check. Upon arrival at the first security checkpoint we were informed that because the boarding passes were printed at the hotel and not on site at the airport, the authorization was not valid and would not scan in their system. We were ushered to the full security, shoes-off, body scanner line.

My kid approached the body scanner with her disconnected insulin pump in hand. "This is my insulin pump. It can't go through the luggage x-ray or the body scanner. It needs to be visually inspected."

She was instructed to hand it to the agent behind the luggage scanner. As she did so, she reiterated that it could not go through the luggage scanner. He smiled and nodded, and seemed familiar with the issue. "Yup- I'll meet you on the other side."


The agent walked away with the pump (a little unsettling) and my daughter went through the scanner. The pump was handed back on the other side, as promised, and we continued on our way.

A couple of notes on our experience:

-On past trips I've been the person to speak to the TSA people, but I asked my daughter before we left if she'd be willing to be her own spokesperson through security. Eventually an opportunity may come for her to fly without me and I want her to be comfortable with the process. We talked quite a bit ahead of time about what could happen and how she would respond. She handled both experiences well.

-We're often tempted not to mention the insulin pump and just go through the metal detector hoping for the best. We certainly do that at museums and other more minor security checkpoints. But for some reason the pump occasionally does set off the metal detector. Also, because my daughter is on the smaller side, the pump is always visible in her pocket or on her waist band so it's immediately obvious that she hasn't followed the instructions to empty her pockets. For those reasons, when we're at TSA security or touring a highly secure location like a government building, we've always mentioned the pump first with the goal of heading off suspicion before it can begin.

-People make a variety of choices about going through the full body scanners and about putting their pumps through the luggage scanners. Some leave the pump on and opt for a pat-down, after telling the TSA agent that they want to avoid the body scanner altogether. Some send the pump through the luggage scanner and hope for the best despite many pump manufacturers' recommendations to the contrary. Some wear pumps through the body scanner, which is also not recommended for my daughter's brand of pump. To us the option of asking for it to be visually inspected seemed like the safest, easiest, least intrusive, and most efficient solution.

We don't fly often, but thus far we've had no two TSA experiences which were alike diabetes-wise. Sometimes the carry-on's contents have been called into question. Sometimes she's patted down despite the insulin pump being the obvious reason for the metal detector alarm. This week's TSA experiences were our smoothest ever. Maybe we've finally hit the sweet spot on the security learning curve. Maybe the voices, including my own, of people who've been reaching out to the TSA requesting common-sense security measures for people with diabetes are finally being heard. Or maybe the TSA is finally realizing there are more important things to worry about than a 15 year old girl with an insulin pump.