(Almost) Up in the Air

How many OmniPods would you take on a ten day vacation?

If you were going to leave your home early one morning and drive over an hour to an airport to catch a four hour flight, one that would take you to a remote island location for ten days... how may OmniPods would you bring?

I brought eleven

I also brought two hundred test strips, an extra MultiClix, an entire package of lancet cartridges, one backup OmniPod PDM, a ketone meter with a 50 strips, two glucogon kits, four vials of Apidra, five DexCom sensors, a brick of juice boxes, candy, fast acting glucose tablets, five packages of needles, FlexiFix, AAA batteries, a DexCom charger and three copies of the travel letter that our endo wrote.

Other than the fact that everyone was a mix of exhausted (long year) and excited (we never go on vacations like this), our flight to the Caribbean was uneventful. The TSA experience in New York was fast, pleasant and so accommodating that the multiple juice boxes we brought through screening were treated like medication. Actually, for the first nine and a half days of this vacation all of my extra supply preparation was unnecessary. We never had one issue with our D technology, sensors stayed on, insulin resisted the heat and diabetes was a perfectly behaved travel partner.

It wasn't until we were literally walking out of the door to return home from our island getaway that things began to go the other way. I knew that the odds were stacked against us, I mean, how often do you get to go ten days without a significant diabetes issue that requires your inner MacGyver?

During travel, I keep enough supplies in my carry on bag to complete one site change. The bag also contains enough insulin and needles to manage for a full day without needing the backup supplies that are in my larger luggage. I lug that stuff with me when we fly with the hopes that I'll never need it.

Was it an omen, probably not... I don't believe in omens, but I did drop a vial of insulin as I was packaging the Apidra back into it's ice pack for the trip home. Fun Fact: I've never broken a vial of insulin until the one in my hand hit the stone floor of our rental home. No matter, I had three more. #prepared

We drove our rental jeep to the ferry, made the short trip from island to island and then jumped into a taxi destine for the airport. It was during that taxi ride that Arden's BG got a little squirrelly, I bolused. TSA was again a dream and before we knew it our bags were off to the belly of the plane. All that was left to do was to grab a pre-flight meal and wait to board. We ate, found our way to the correct gate and planted ourselves in some soft chairs. 

Ferry Departure

BEEP BEEP goes the DexCom

"I must have miscalculated the airport food", that's what I thought when Arden's CGM indicated that her BG was rising thirty minutes after our meal. I reassessed and added more insulin but the beeping continued, soon after the arrows changed from diagonal up to one arrow straight up. Before long, the arrow found a friend... two arrows up. Hmmm, WTF!? Turns out that Arden must have unknowingly banged her leg into something during our trip from paradise to the airport, I noticed a tear on the OmniPod adhesive and the canula looked withdrawn. Interestingly, on the same day that I dropped my first vial of insulin our first canula became dislodged. What a diabetes day we were having, I wonder what could make it even odder? How about my first airport pod change at gate 4. Honestly, it didn't bother me to change the pod there and Arden didn't care... she isn't shy about diabetes in public. So I balanced everything on my lap and set what didn't fit on my leg behind Kelly on the chair next to me. I filled the pod, primed, inserted and removed the old device in a few moments. We tested, increased Arden's basal rate and then busted out a good ole' fashioned needle to combat her wildly high BG of 425. 

I'll admit that I was a bit panicky for a moment, the notion of chasing this high number in the air dind't sit well but then I remembered that we had a full complement of juice and other items. I did experience a wave of dread as I used the only spare pod that I had in my carry on bag. I began to run through scenarios in my mind, how I could talk TSA into retrieving my luggage from the plane so I could get more? But then I calmed down, we boarded the island way (see pic at top) and a number of hours later we landed at JFK airport where Arden's BG was 113. Seems Ben Franklin was correct, An ounce of prevention is worth a pound of cure. Smart guy. I may not be Franklin but I know this for sure... Bring extra supplies when you travel, you never know what may happen.

Luckily, we can only afford to go on a trip like this once a decade, so I have time to rest and recover!

Finally, here are some obligatory vacation photos.

Voldemort

I remember one summer when it felt like I heard the words, "Harry Potter" everyday. There were commercials online and on television, beach towels by the pool with the young wizard's face and it seemed like everyone wanted to see the movie about the boy with the scar on his forehead. I felt like I couldn't get away from the words, "Harry Potter"... but then one day it was all gone. No one uttered the words, the towels were packed away and the world moved on to the next thing. Today, maybe I see one of the films on cable while trolling the channel guide or because the films are so engrained into out lexicon, someone makes a joke with a HP theme, but for the most part I live my life without hearing the words or focusing on a visual reminder. 

Last night, still a little loopy from our vacation, Arden and I fell to sleep on the sofa together. Kelly asked me to bring her upstairs as she went to bed, I agreed, and then promptly went back to sleep. I slept last night next to Arden and held her DexCom receiver like it was my teddy bear. When I opened my eyes this morning that receiver and Arden's OmniPod PDM were the first things that I saw. Then, as it does each time that I awake, my mind sent me a message. I receive this message each time upon waking without fail. It comes to me when I open my eyes in the middle of the night, at my alarm in the morning, and after I nod off for ten minutes on a flight to a family getaway.

I wouldn't call the message something I hear in words, it's more of a feeling that I get, like someone whispers into my brain, "Arden has diabetes, is she okay... check on her".

After I woke up this morning I wondered how many times do I hear, say or think the word, "diabetes"? How much of my conscious and unconscious consideration is used everyday, managing, calculating and worrying.

I tried to imagine what it would be like to live an entire day without that word popping into my head. Would it be freeing, would I suddenly have all of this free time that I wouldn't know what to do with? Do you think that I'd find a new hobby or take more time to write. Would I exercise, get a bike, could I finally plant the vegetable garden that I know my wife desperately wants but I just can't figure out how to make time for?  I'd like to find out...

You know what though? Forget about me, I'd love to see Arden live a day without the word in her head. I'd like to know what it feels like to write one last blog post wishing you all well before I closed my diabetes blog because some company developed an artificial pancreas that was foolproof or a genius in a lab found a way to reverse all of this. More realistically, I'd take a day pass, but they don't really exist do they? Remember in the first HP movie when the wand salesman, Ollivander, told Harry that no one speaks his name and then everyone went on to say Voldemort about a thousand times? I bet if there was one more film about life in the Wizarding World after Harry defeated him, I bet people would still say, "remember when we were fighting with Voldemort, that shit was crazy!". 

Perhaps everyone gets a Voldemort in their lives. Maybe that's each of our chances to add to the collective human understanding. I think that I prefer to think about diabetes like that, not as a burden but a mantle. Still, I would like a day off once and a while. But since that's not going to happen...

Voldemort, Voldemort, Voldemort!

OmniPod, DexCom... you impress me

 

Tonight is the sixth night of our island vacation and I wanted to take a second to report in. So far during our trip Arden has been on an airplane, outside in the rain, lived in 90º heat and spent countless, often consecutive hours in the ocean. 

I am here to report that Arden's diabetes tech has not skipped a beat... I can't tell you just how invaluable these tools are in difficult situations like these. Between odd sleep times, varied and strangely timed meals and all of the activity, there is enough going on to mess with even the most Zen diabetes guru. I am not ashamed to tell you that I'd be just a little lost without our gear. 

I'll leave you with a picture of Arden in a mango tree.

I hope everyone is having a great week! 

Holy @#%&*$% A1C

From the American Diabetes Association's explantation of Estimated Average Glucose (eAG) - check it out!

August is rapidly approaching which can only mean two things around here. The seven year anniversary of Arden's diagnosis, and the sixth anniversary of this blog are both coming soon.

Seven years in dog years is what, 49? Well in A1C years, it's 28. Arden has had twenty-eight A1c tests since she was diagnosed and most of them didn't go too well. As I've shared in the past, Arden's A1c began it's journey above nine and drifted lower over the years as I learned how to better manage diabetes. It wasn't until recently that we've made real strides in decreasing that elusive number.

I spoke in the past about the things that I attribute to helping Arden's A1c to fall. Things like finding the correct insulin for Arden, and technology like her DexCom G4 and OmniPod insulin pump. I recently wrote about Arden's decision to stop eating Fruit Loops and I think that may have put us over the top in this battle against "the number".

One year ago Arden's A1c was 8.1. Nine months ago we made real progress, 7.5 and back in January it was 7.4. I loved that 7.4 because it showed that the reduction wasn't a fluke, we were on to something! Today when we went to her Endo appointment I was certain that we would see another incremental reduction, and I was secretly hoping for 7.1. As I watched the timer count down on the testing equipment, my heart sped up just a bit. The last 10 seconds ticked away slowly, as I hoped to see that 7.1.

I'm not sure how I kept the words in my head when I saw the number, but somehow I didn't say, "Holy F*ck" outloud when the machine displayed Arden's latest A1C.

It was 6.5.

Six point five.

Six and a half.

Arden's A1c had dropped .09 in five months. I must of read that wrong I thought, so I stood up and looked closer and there it was just as clear as day, 6.5. I turned to Arden and said, "We did it Arden!". Then, without missing a beat, Arden warned the nurse that I was going to cry - but I never did. I wanted to cry, I wanted to scream into the air but I just sat back down, smiled, and told the nurse how Arden decided all on her own after our last visit to stop eating cereal for breakfast. "This was all her", I told the phlebotomist, "Arden asked after her last A1C what she could do to help it to go lower and I told her... she did the rest".

Back in February when Arden's A1C was 7.5 I listed a few simple reason that I thought helped the most to decrease her average daily blood glucose. I'm going to post them again here and then add two new ones.

Support - Love and support from family, friends and teachers is huge.

Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.

CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.

Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.

Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.

D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay.

new

Aggressively dealing with BG spikes - You know the ones, after a site change or miscalculated meal. In the past I preferred smaller boluses in the attempt to avoid a low but now I lean on the CGM and smack a high number in the face, preferring to catch it with carbs if I've administered too much insulin. The other way always left me bolusing and rebolusing for hours on end. The only thing I was accomplishing was taking five hours to guide Arden's BG back into place. Now, insulin, watch, catch the fall - done.

The new way that we manage BGs during the school day - Arden has four more days of school left this year and she has NEVER been to the nurse for a diabetes related reason, never. Arden and I text and speak by cell phone to manage her moment to moment type I needs. This new plan is one of the keys to her A1C reduction. In the past, I would make insulin and carb decisions only when Arden was with the nurse. This schedule left large gaps of time when high BGs, miscalculated carbs and the other diabetes anomalies would be left unaddressed. Now, Arden can text me if her BG is slightly elevated after lunch and we make small adjustments as we would if she was home with me. Lows are handle in kind, no more big carb intakes because I won't be in contact with Arden for many hours. We bump borderline lows and readdress if that bump didn't do the trick. No longer is the school day an eight hour crap shoot, Arden's diabetes is being dealt with immediately when in acts up. I plan on speaking more about this at length in the coming months.

This seems like a good time to remind you that I am not a doctor and that there is a clear message at the bottom of this page that insists that you never take anything that I say as medical advice because I do not mean these words to be such. I would however suggest talking about these easy adjustments with your doctor...

Update on Tuesday, June 11, 2013 at 2:59PM by Scott Benner

I originally posted an image with this piece that had some bad information on it. Thank you to Sara (@saraknic on Twitter) for pointing it out and leading me to the new graphic from The American Diabetes Association. Please check out their page about Estimated Average Glucose (eAG) and how it relates to A1C. Very cool stuff!

Softball Aristotle

Just a quick thought for Friday...

Arden played in her first All-Star game of 2013 last night. She was 3 for 3 with three singles and two RBIs. She caught two fly balls, made two long throws to first from third base and didn't let one hit ball, of which there were many, past her at third. She is eight years old, probably the smallest girl on her team and did all of this in-between having her blood glucose tested, getting insulin and having me adjust her basal rates through a fence while countless people looked on.

After the game we drove home together and Arden started to talk to me about the game. She said that she felt bad for some of the girls because it seems like, "They feel a lot of pressure when they play". She went on to talk about how she wished they didn't feel like the game rested on their shoulders and went on to speak about how she keeps her head clear when she plays. She actually said that it's important to play relaxed.

I talk all of the time about the perspective that diabetes lends to people who live with it in their lives everyday. I always think about those lessons in terms of what they bring to me but last night in the car... I began to see the perspective that type I gives to Arden. She is fiercely competitive, to the point where I have to bolus for her adrenaline when she competes, but she doesn't feel pressure when she plays. How is that possible? She isn't nervous or overwhelmed, she doesn't get too high if they win or too low if they lose (not diabetes high and low, emotional) and she's even aware of other players feelings as the game is played.

The only answer I can come up with... Looking at your meter when it says 39 while listening to the four frantic beeps of a CGM telling you that it's time to worry about your immediate well-being, must really prepare a person to handle life's pressures.