The Blood Won't Come Out: Day of Diabetes Deeper Look

This post is an indepth look at a 20-30 minute window from our #DayOfDiabetes.

Last night Arden's DexCom transmitter sent a message that it needed to be replaced (That is expected as it is over a year old).

Today, during a moment that I thought would be calm, I called DexCom to order a new one. DexCom told me that I needed to call EdgePark Medical Supply.

I called Edgepark. Long explanation. Was transferred.

Arden texts that her CGM is ready for calibration - I tell her to test and put number in.

Someone picks up at Edgepark. Long explanation. Was transferred again.

Arden texts, "The blood won't come out, I did it like 12 times".

So now I'm talking to Edgepark and texting with Arden because for the first time in over seven years of having type I diabetes. She can't get a blood drop no matter how hard she tries.

Edgepark is explaining my insurance, the guy is nice and making small talk but I need him to shut up because I can sense that Arden is getting upset. 

"Still not working, not going to the nurse" - Arden's Text

I tell her to try different fingers, different sides, to squeeze her arm toward her hand and then her finger toward the tip. Nothing is working.

"221" - "I got it dad but I had to do the middle finger and it hurts" - Arden's Text

I tell her that I'm proud of her by text while confirming our address with the Edgepark CSR and while that is all happening, no shit, Arden's timer for lunch goes off.

Cell phone in my left hand, telephone in my right, credit card on the counter, lump in my throat because Arden is upset yet unwilling to quit and the alarm goes off. I laughed... "At least we don't have to test", I text...

That's a #DayOfDiabetes all packed into 20 minutes.

Bermuda Triangle

Last week around eleven in the morning, Arden texted from school to say that it was lunch time and she couldn't get any of her test strips to work. "I've tried five and they've all errored", her text read. 

No problem I thought, "What's your CGM say?"

"???", Arden replied.

We found that Arden could still deliver insulin with her OmniPod PDM so we bolused for lunch in the blind and I told Arden that I was leaving to bring her a backup meter. On the way to the school I spoke with OmniPod customer service (Picked up on the first ring!) and they suggested that I try a new vial of test strips. The CSR finished the conversation by saying that if the test strips weren't the issue, they would happily overnight us a new PDM.

I met Arden in the office a few moments later and we tested successfully with the new strips. The CGM sensor however, was toast, so we changed our testing strategy slightly and synched our reminder alarms. Arden went back to lunch and we managed the remaining four hours of the day the ole fashion way... with a meter.

In all of the years that Arden has had diabetes, this is the first time we've experienced a total and simultaneous loss of the ability to quantify her BG. Even though the timing couldn't have been worse, I never felt frazzled and I can only attribute that calm to having so much experience. I'm quite certain that this moment would have given me an aneurysm five years ago. 

Before I say this next bit, I want to remind you that I am not a medical professional and that the things that I share on Arden's Day are never meant as advice. There is a disclaimer at the bottom of the page if you'd like to read it. I gave Arden her lunchtime insulin in this situation without testing or the benefit of a CGM based on a number of factors. Time of day as it relates to her last bolus, we spoke about how she felt at length, based on historical data - Arden's BGs at this time of day over the week, the fact that she was going to immediately begin eating and I would be there with a new meter and strips in less than 10 minutes. I would never bolus without knowing the state of her BG in a normal situation.

We swapped Arden's DexCom G4 sensor (It had done more than its fair share... if you get my drift) when she arrived home and we were back on the path of technology based diabetes care, by dinner time. The PDM/meter has not given us a problem since, so I'm chalking this all up to an anomaly caused by faulty strips - but who knows.

Sure, you can go to the Selena Gomez concert

If you read Arden's Day with any frequency you know that we manage Arden's Bgs with text messages while she is in school, at a friend's house and every other time that she isn't in our physical space. I've written how the process has eliminated so many issues, lowered her A1c and making us all to feel more independent are but two. I am genuinely excited to tell you that we have recently added, "Go to a concert" to that list! Now you may be thinking that there is a world of difference between managing type I from across town and being an hour away in a stadium singing along with the former Wizard of Waverly Place, but you know what - not so much. It turns out that the biggest hurdle when considering the difference between the two situations is realizing that there aren't any.

I have two main concerns when Arden isn't with me. Loss of communication and An unexpected low BG. All that remains is manageable with pre planning. Supplies, food, and juice is no issue to pack and have at the ready. A well thought out testing schedule eliminates most surprise BGs and Arden's DexCom G4 finds the ones that slip through the cracks. Of course no one can plan for a significant BG drop that defies logic, that possibility is the diabetes equivalent of having a car accident - you wear your seatbelt, drive safely and hope for the best.

I received a call asking if Arden could go to the Selena Gomez concert with one of her best friends, I didn't hesitate to say, "Yes!". One year ago the mom on the other end of the phone wouldn't have been able to finish her sentence before I said, "Thank you but no". But so much has changed in the last year. Now when a person that I trust calls and asks for Arden to accompany them for an evening, I can say yes with less trepidation and that makes me very happy for Arden.

Here's how I handled Arden going to the concert...

First, the mother and I had a nice lunch together the week before the event. Even though Arden goes to their house for play dates, we still manage through texts while she is there so the mom doesn't have a lot of interaction with diabetes. She understood the basics and knows how to react in an emergency but the concert was going to require me to advance her understanding of type I diabetes. 

We spoke about all emergency possibilities in very, very real terms. I explained that I needed her to understand all that could happen, even though the likelihood of it happening was extremely remote. 

I said thank you for her willingness to except the extra responsibility and went about the seemingly impossible task of preparing a person for an evening with type I without overwhelming or causing them to obsess during the event. The last thing I wanted was for the extra considerations to take away from the experience that she was going to have with her own daughter.

We spoke about supplies, testing times, CGM check ins and how to talk to the security guys in a way that makes bringing food and drinks into the venue easy. We talked about panic situations, CGM arrows and how to use glucose gel. I explained low blood glucose seizures and that I was going to discreetly slip her the glucose gel because the sight of it makes Arden anxious.

I couldn't have been prouder of Arden and her friend's mother when they pulled out of our driveway for the concert. The conversations that we had and the topics that they had to consider, just to go to a concert, were more than a nine year old and her friend's mom should be asked to think about - but they did it. When Arden got into the car with her friends she was smiling just as a little girl on her way to a concert should. Thankfully, her BG's were rather uneventful during the evening, she required two maintenance boluses during the show (Adrenaline I imagine)  and a juice box on the ride home (No more Adrenaline) but other than that, easy sailing. When she walked through the door at almost eleven, her BG was 104 (DexCom had the BG at 74). Success!

Never once that night did I have to speak with the adult who accompanied Arden about anything related to diabetes. Actually, at one point she sent me a text and asked, "Is there anything I need to be doing?".

The bag of supplies I sent was returned to us unopened. Arden didn't need the extra OmniPods, insulin, needles or food. In fact, she would have been just fine had I not sent any extra supplies, all she needed was the juice box that she always carries in her bag.

I want this story to illustrate that everything is possible with type I, but what I don't want is to make you feel like planning ahead isn't necessary. This trip included a number of conversations, pre planning, a well packed bag and a little luck. Actually, to show you how much luck - Arden's OmniPod experienced an error the morning after the concert and I had to go to school and change it around 8:30 am. Can you imagine if the pod would have shut down during the concert? I could, and that's why we had a plan for how to handle that situation, should it arise. We planned for every conceivable possibility and talked about each ahead of time so that if they did occur, no one would be caught off guard or be unprepared for what to do next. 

Arden popped out of bed for school the next day and put on her concert t-shirt still smiling from the evening before -- suddenly, the effort that it took to get to that moment felt like no effort at all. 

Expired Glucagon

I think that we can all agree that the best Glucagon is the one that you never open. I understand how uplifting it is to toss a Glucagon kit into the trash, nothing feels better than knowing that it was never opened - but what if I told you that there was something better? Something easy and awesome that you can do with your expired Glucagon?

Practice. Practice. Practice.

My best advice for what to do with your expired kits, practice. Parents, siblings, friends and relatives will all benefit from being able to learn how to help in a severe low blood glucose situation. I know that we all hope and want to believe that we will never have to use Glucagon in an emergency situation, but just in case, the first time you hold one shouldn't be during a seizure. 

This I know from experience.

Not long after Arden's diagnosis back in 2006 we tried to eat Chinese food for the first time since diabetes entered our lives and well, that didn't go very well. I injected too much insulin and about two hours later, Arden was having a seizure. We placed Arden on the floor, Cole called 911 and Kelly began to rub glucose gel into Arden's cheek while I was frozen and staring at the Glucagon. "I never thought I was going to need to know how to use it", I mumbled. Thankfully, the gel Kelly applied brought Arden out of the seizure but I'll never forget the sickening feeling of having the tools to help my daughter in my hands but not the knowledge of how to use them.

So practice with your expired Glucagon until it doesn't feel awkward. Then once everyone in your life is proficient -- donate them to your child's school nurse or a local school. 

Glucagon is the only thing in the world that I buy hoping that I will waste, but you don't have to throw it away. School nurses, Glucagon proxies and other school personnel will be grateful for the opportunity to get comfortable with the process. Speak with your school nurse and ask if an expired Glucagon kit is something that they'd be interested in having and you'll feel twice the pleasure the next time a kit expires.

Helping Children with Diabetes Gain Independence

So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!

See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 1 of my 6 part series on gaining independence through technology.

Part 1: Helping Children with Diabetes Gain Independence 

I recall being handed syringes in the hospital and thinking that they seemed so very lightweight. I guess that I had never held one before that day and didn’t know what to expect. They felt flimsy in my hand and I struggled to understand just how these bits of plastic and metal were going to keep my daughter healthy.

That was my perspective only a few days removed from our two-year-old daughter’s type 1 diabetes diagnosis in August of 2006. Today, I realize that if Arden had been diagnosed fifty years earlier those little needles would have likely looked and felt like something from a science fiction movie.

Gaining Independence through an Insulin Pump

The technologies that help to improve the lives of people with type 1 diabetes are nothing short of amazing – and the ways that we use that technology are ever expanding and evolving. I love the idea of utilizing what we have available today to the fullest, but I always keep an eye on the future and wonder where it will take us.

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The first time I saw the table full of insulin pump samples at our endocrinologist’s office, the OmniPod insulin pump jumped right out at me. I was first struck of course by the tubeless nature of the device, but quickly, my mind raced with the possibilities of how the manufacturer could continue to adapt and blend advancements, because of its self-contained design. I told my wife, “I like that one. When they improve it we won’t have to wait to benefit.” That’s what I liked most about the OmniPod – it felt like the future and I couldn’t see a limit to the possibilities of where it may go.

Here we are many, many years later and I find myself about to talk to you about technology and how it has improved my daughter’s life – really my family’s life – and given her more independence. But now I’m going to talk about another piece of technology that we all have in our pockets, something that when used correctly will take you to the future and free you from restraint. Let me explain…

Giving Our Children More Freedom with Diabetes

Our children go. They go to school, to their friend’s house, to a movie – they are constantly going. Parents of children with type 1 diabetes are conditioned to fear the feeling of their child’s natural desire to just go. We want our children to have that leisurely feeling of course – that carefree, run-out-the-back-door feeling that we enjoyed as children. I don’t want to think about what could go wrong on a school bus ride. I hate telling my daughter she can’t visit a friend’s house because their parents don’t have a working understanding of diabetes and I am willing to bet that you feel the same.

Freedom and independence for our children with diabetes – but how?

How Technology Can Provide More Independence

Arden was missing class each time she visited the nurse’s office at her school. Before recess, before gym, before lunch, after exercise and every other time diabetes came to call, Arden missed class time. It was only five minutes here and three minutes there, but by the end of the day those minutes added up. After a week, they were hours and by the end of the year, they were days. Days of learning, days of socialization and days of her life – gone.

If only I could just be there, stand in the corner so I could invisibly wander to her desk and oversee her insulin dosing decisions. I just needed to be able to whisper in her ear that she didn’t need all fifteen carbs to correct that low blood glucose. I only needed to be there for a second, just like when she is home with me. Then it hit me… I can be.

Arden was in her bedroom one Saturday afternoon when I needed to know what her blood glucose (BG) was. Instead of walking upstairs I sent her a text message that said, “Test your BG please.” A few moments later I received a return message: “134.” I was with her, but I wasn’t. We were managing her blood glucose with only a momentary pause to her activity; this was the minimal interruption that I dreamed of. If only she could have her phone with her at school…

I’ll be back soon to tell you how I explained to the school what I was planning for her diabetes management, their surprising reply and all the goodness that’s come since.

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part 2
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part 4
part 5
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Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's Omnipods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.

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