I want to thank the Co-founder and President of Diabetes Daily David Edelmann for inviting me to contribute periodically to his wonderful site. Moreover, I want to thank him for understanding when I expressed my desire to repost on Arden's Day, in it's entirety, my work after it had run on his site. This is not the norm and generous of David to agree to. Reposting is not an attempt to "double-dip", it is being done so that all of my diabetes writing can be housed on Arden's Day for reasons of backup, cataloging and posterity. Please know that I was not paid for writing on Diabetes Daily nor did I compensate them. With that said, here is my second piece for Diabetes Daily as it ran on December 26, 2012.
What do you imagine was the most difficult aspect for me when I sat down to tell you about a ‘Day in the Life’ of a child and her father who are living with diabetes?
The most difficult part was deciding where to begin chronologically…because our day never really ends.
Since I’m not a fan of blog posts that read like log books, I’ll spare you the “7:15… my alarm goes off” style that comes to mind when you hear, ‘Day in the Life’ and instead tell you a few stories that will bring you closer to understanding a typical day as it plays out in my head, heart and home.
My daughter Arden is eight years old. She’s had type 1 diabetes since a few weeks after her second birthday. I have been a Stay-At-Home Dad for coming up on thirteen years. Before diabetes, morning were hectic, but now….
Drag a comb across my head:
I wake up each day one hour before Arden so I can make adjustments to her blood glucose if they are needed. I decided a long time ago that I would always do my best to make sure that Arden can begin each day with a steady and in range BG. I don’t have type I so I don’t know for sure, but I’ve spoken with adults who do and their descriptions of high and low BGs is heart wrenching. I can think of no worse fate then not feeling in your mind and body like yourself. So even though I know Arden’s BGs won’t be perfect throughout the day, I make sure that she doesn’t have to wake up feeling less then what she deserves.
I make adjustments to her BG around 6:30 am. That’s usually enough time to coax a high number down or a low number up with a negative temp basal. That way when she wakes I can pre-bolus for breakfast, giving her Apidra time to begin it’s fight while she runs through her daily fashion routine. I like to see at least a diagonal arrow down on Arden’s DexCom G4 before she begins to eat breakfast.
#&@#*&$ breakfast is a bitch isn’t it? I’ve taught myself how to let Arden have what she wants in the morning while mitigating her BG spike. It took a long time to find the combination that held that spike down without causing a low three hours later. Most days my system works, but you know, sometimes not so much.
I just became comfortable this year with a lower BG and descending CGM arrow as Arden steps on to her bus. I know that the food will quickly play it’s part during that ride to school, I trust the science of it now but that trust took years to build. Somewhere along that bus ride, the dance begins. Some days I lead, some days diabetes leads. Each new day is a surprise that I meet with a calm that only years of living with diabetes can lend to a person. “Here we go,” I hear those words in my head as Arden walks down our front lawn everyday. Here we go!
Arden is in third grade:
This is a big year for us in regards to diabetes management (sorry, I know some don’t like calling it management, I don’t particularly like it either but it makes the point) in school. During Arden’s first three years she would visit the nurse at every BG check, bolus, and before and after activity and food. This year is way different and very exciting. Arden carries her cell phone with her throughout the day and she and I converse, mostly through text message, making decisions about testing, food, and everything else. She has yet to visit the school nurse this year for one, not one, diabetes related issue. It’s like the coolest thing ever!
Arden’s phone has reminders set and she texts me the information that I need to help her make decisions about her diabetes management. If the reminder doesn’t get her attention, thats okay, my phone has them too. Most conversations go like this:
Arden: 127 diagonal up (we use an emoticon arrow)
Daddy: Okay, let’s look again in 20 mins.
Arden: Now it’s 150 and steady.
Daddy: Leave that, text again at next reminder.
Arden: k
Daddy: Love you.
Arden carries a small bag that holds her phone, OmniPod PDM, lance, a juice box, bit of candy and extra supplies with her throughout the day. We briefly speak before lunch to talk about her bolus and if she feels like she can finish her meal. It’s a lovely way to do things that wasn’t easy to set up on the school side, it took time and patience but I’m so happy that I handled things the way that I did. We’ve slowly built a solid relationship and no one is happier then the school that Arden is no longer missing class to visit the nurse.
If I struggle with BGs, and of course I do, the worst time is after school:
The bolus that is needed to hold down a lunch time spike is bigger then I’d like because there is no opportunity for Arden to prebolus the meal. Recess is immediately before lunch. No big deal but it does leave her CGM line drifting down around 4:30 p.m. It’s a slow decline but one that needs to be addresses with food. I can’t make basal changes to help because, as anyone with diabetes can tell you, it doesn’t happen consistently. I strongly dislike the pre dinner snack. I frequently under value the carbs or the bolus doesn’t have time to work before dinner. Something always gets askewed this time of day.
Dinner, practices, homework, shower, bed:
If only it were that easy. Dinner bolus, I am always later with that bolus then I want to be. Then there’s that small but normally stubborn post meal spike. Nothing of course makes homework more of a chore then it already is then a high BG. During the spring and summer Arden has softball, during the winter, it’s basketball. My son Cole has the same schedule and so this time of day goes by the fastest, it’s the most difficult to maintain control of and It sucks.
Dad, I’m hungry:
The bedtime snack adds three more hours to my management day, “three hours,” who am I kidding, it’s more like five. We always get a nice pre bolus in before a bedtime snack but Arden’s BGs can be difficult at this time of night. It’s a literal crap shoot. The correct amount of insulin is always either too much or not enough. On the evenings that everything actually works out as intended, I genuinely don’t know what to do.
It’s between 9 p.m. and 2 a.m. that I get the most done around the house. Laundry, dishes, a little TiVo. I’m generally exhausted by 10 pm having spent my day literally living my life and mentally walking through Arden’s, but this is not the time to rest. Diabetes keeps on chugging along. Having a CGM makes the entire exercise significantly easier. Back in the day I’d be sneaking into rooms to test at set intervals, now those test are less frequent and the new DexCom has a great signal range so often I can keep it with me, eliminating the need to run back and forth to Arden’s room.
With some luck Arden won’t need more insulin after she has gone to sleep, but I’d estimate that she does about three times a week. I don’t go to sleep until I’m sure that there is no more active insulin in her body. On good nights I hit the pillow around 1 am. Most nights it’s 2, but 3 or 4 isn’t unheard of.
I’ve taught myself to live well on five hours of sleep, I normally get those hours between 2 and 7 am. It’s all worth it when Arden wakes up in range.
I guess that is why I choose to begin this story in the morning, not because it’s the beginning to my day chronologically, my days don’t feel like they begin or end. Quite honesty, my days haven’t felt like they’ve reset since the day Arden was diagnosed.
I think that I choose the morning because her face renews me everyday when I see her open her eyes feeling like herself.