I see London, I see Florida, I see Arden's Dexcom CGM data
As our children get older our family is sometimes required to split up to accomplish everything on our calendar. You know, our son Cole my have a baseball game on one side of town while Arden has a game three towns over, stuff like that. Kelly and I never like to miss the kids stuff but it happens.
Last week presented us with a twist on that theme when Kelly's job took her to London the day before I was to leave for a Florida based college baseball recruiting weekend with Cole. Kelly left on Wednesday and was returning late on Friday night. I was leaving early Thursday morning and not returning until Sunday evening. Arden had school on Thursday, she was off Friday - okay, you following the set up? Kelly in London, Scott in Florida, one day of school and a day off to cover before Kelly returned home... what ever should we do?
My first inclination was to take Arden to Florida but that would mean her missing a day of school and to be honest, I didn't want to buy her a plane ticket and drag her from one hot baseball field to another, she would not have enjoyed the trip and I wouldn't enjoy spending the money.
Too expensive + too boring + too much school missed = Arden stays home.
The only person available to stay with Arden at our home was my mother and she knows exactly zero about managing type 1 diabetes, but did it matter that she didn't know anything about the day-to-day of type 1? Not if I can see Arden's BG on my phone it doesn't.
I thought about all that could 'go wrong' while I was gone and wondered if I could control the variables remotely, the possible issues that I could image were:
Could Go Wrong
- OmniPod insulin pump could need to be changed (Arden can do this on her own.)
- Dexcom sensor could need to be changed (Arden has never done this but without the Dexcom, none of this works.)
- Overnight (Arden wouldn't wake up overnight if a tugboat crashed into our house.)
- School (I can run school remotely as we normally do... as long as my plane had WiFi)
Plan for Could Go Wrong
- If a pod needs to be swapped Arden will do it but we don't keep insulin at school so I sent Arden to school on Thursday with pods and insulin and wrote to the nurse explaining what was going on. CHECK!
- Having a working Dexcom is the lynchpin to this entire plan and neither I or Kelly can come home if it stopped working. Arden has never changed a sensor by herself. Hmmm, wait... a boy in Cole's grade wears a Dexcom! I called his mother (who I know at best tangentially) and explained the situation. I told her that it was unlikely that Arden would let her try to put a sensor on her but asked if she could be there to oversee if necessary. She rocks and agreed to help if needed! CHECK!
- Overnight what I really needed was an adult to answer the phone and wake up Arden for me, my mom can handle that. CHECK!
- I booked a flight on an airline that has WiFi. Kelly was prepared in London to take over while I was in the air should I encountered a connection issue. CHECK!
Best laid plans and all, but how did it go in the real world?
During my flight
Everything worked out as planned. I woke up early for the plane, made Arden's lunch, counted carbs and packed up her pods and insulin. My mom woke Arden up in the morning, we texted while she was getting dressed to get her BG in place for the morning. The WiFi on the plane was great but we still maintained a multi-person text message thread so Kelly could watch what was happening from London and take over if I dropped out of the thread. We bolused once or twice while Arden was at school that morning, all from 35,000 feet.
I was on the ground for Arden's lunch time pre-bolus and on a ball field when it was time to talk about her pre-bus routine. My mom cooked dinner and I pre-boluses for it. On Friday I managed Arden's BGs and mealtime insulin from my phone while Cole made the catch you'll see below. Arden changed her OmniPod during a playdate late that afternoon without incident. Kelly returned to our house around midnight and took over the diabetes stuff. I slept that night like a baby.
My Take Away...
With a reasonable, but not heavy amount of pre-planning, we left our eleven year old daughter at home with a person who had almost no working knowledge of type 1 diabetes and everything was fine. Arden experienced a low BG (53 on Dex, 61 by finger stick) Thursday night around 2:30 am. My Dexcom Follow app alerted me, I called and woke up my mother who in turn woke up Arden and she drank juice as I instructed. I then waited up to make sure that the juice had the desired effect and when all was good about twenty minutes later, I went back to sleep confident that I would be alerted if something changed. In the twenty-four hour period that began at school and ended with that low, Arden's Bg was mostly stable, largely in range and only spiked to 200 twice. Two spikes and one low felt like a huge win to me.
Tomorrow night Arden goes to a sleepover at a friends house, no one in the home has the slightest idea about type 1. We will arrive ten minutes early to install the Dexcom Follow app on the mother's phone, I'll talk about how to handle emergencies and that'll be it.
Your Take Away...
Long run in centerfield. Cole saved a game while in Florida with this catch in the last inning of game 2.
I'm forever telling you that diabetes and fear do not have to go together and I wholeheartedly believe those words. Last week I put my money where my mouth is for two reasons. A. It was the right thing to do for my family and B. I wanted you to see that even in this completely odd and distant situation, things would work out.
I want to encourage you to take a chance too. Who knows, maybe you can move your life with diabetes a bit closer to where you want it to be.
I'll be talking more about this trip and other topics on next weeks episode (#34) of my podcast. If you haven't tried the Juicebox Podcast yet, it is available on this site, iTunes, Stitcher and everywhere else that podcasts are available. Subscribe today to be automatically notified when new episodes are online - It is 100% free.
Diabetes Breaking Bad
I wrote about this the day after it happened a few months ago but haven't posted until now.
My story about last night begins one week prior... it is an epic opus that answers the age old question, "Will diabetes ever get easier".
My son Cole and I left for Virginia early last Friday morning to attend a four day baseball tournament. The ride took nearly six hours and the games began soon after we arrived. It was during that road trip that I first notice how different the weekend would be without Arden with me, you know, because when I got hungry and reached for a snack... I realized that I didn't pack any food for the trip. If Arden was with me – I would have had enough food to feed ten people.
The next thing I knew I was at a rest stop paying $400 for pretzels and an iced tea, it occurred to me as we checked out that this was the first time that I didn't experience any sort of separation anxiety about leaving Arden in another person's care. Don't get me wrong, my wife is an amazing D-Mom, but I still worry. You know what? It's not worry, it's more a feeling of shirking my responsibilities. This was the first time that I didn't feel like I was passing off my responsibility, it was the first time I didn't feel guilty. "Maybe", I thought, "maybe diabetes is getting easier?".
Kelly and I spoke once during the four day trip (Cole's team came in second place!) about diabetes, Kelly was handling things perfectly and really just needed help deciding if a high BG she was battling with was food or pump related. When she called, I felt like a consultant.
When we returned home Monday night it was almost eight in the evening, thirty minutes later Kelly and Arden arrived at the house from Arden's softball practice. Kelly promptly packed a suitcase and left for a three day business trip. We almost didn't see each other except to pass on the details of Arden's BGs.
The next morning I was unprepared for reality and still pretty tired from all of the driving I did on Interstate 95 so I took the kids to a morning movie. We sat down with a little popcorn, ready to enjoy the show. Then things broke bad...
Arden's insulin pump experienced an error and shut down about half way through delivering her popcorn bolus. I took a deeeeeep breath and said, "No big deal, just eat a little less popcorn and I'll keep an eye on you BG with the DexCom receiver". I remember thinking that we could stay for the movie and Arden could snack a little. I didn't want to drag everyone out of the theater and back home. Arden looked disappointed to begin with (and hungry) and she had brought a friend with her. Lots to consider. I reached into her bag for the DexCom receiver, and it never ceases to amaze me when this happens but, it also was having trouble operating.
I'm not going to lie, I recited a string of extremely offensive curse words to myself as I looked down at those tiny, glowing and useless screen.
Arden looked mortified and asked, "We have to leave, right?". I replied, "No way! I want to see the dragon movie, we are staying... just eat the popcorn really slow – like one piece at a time. I know that sucks but its better than leaving, we can go home after and take care of all this".
And that's what we did. Then we went straight home put on a new pump, changed the pesky CGM sensor and bolused like there was no tomorrow. Arden's BG was back to normal again in a couple of hours.
The next few days haven't gone much better. We have a couple of overused sites that need a break, sensors haven't been giving the best feedback and when I finish writing I have to call Insulet because Arden's PDM is causing her Pods to error every time I change the batteries. But none of those annoyances can hold a candle to last night.
Last night was one of the longest diabetes nights that I have ever lived through. Unexpectedly high numbers led to blousing that didn't accomplish much. Those boluses led to an injection, that led to a pod change and more bolusing... I didn't close my eyes at 6:30 am. It was the first time that I was glad that I missed 'Breaking Bad' when it was first on television because no show makes you not care how exhausted you are quite like 'Breaking Bad'.
Kelly is still away for work so the last I did before watching the sun come up was to send my son a text that read,
"Cole. Arden's BG was tough last night. I didn't go to sleep until after 6:30am. Please watch her CGM and wake me if you need to. Don't let me sleep past 11:30. Thanks!"
These last few days have been as unpredictable and taxing as I can recall and I'm fine. I didn't make myself nuts when I left Arden last week, I didn't overreact when shit went wrong, never felt scared at the theater or when I woke up this morning. It's just another day at the office but not because diabetes gets easier, it never gets easier – you just get much better at it (which is kind of the same thing but, you know, different).
Opening Day: The Language of Baseball
Image property of Major League Baseball
Today, in celebration of the 2014 Major League Baseball season, a chapter from my book is available as an excerpt on both Huffington Post Parents and Huffington Post Sports. Baseball, Part II, is the story of how my son and I often communicate about life in baseball terms and how the game lends lessons that go far beyond the field.
The chapter captures a moment from my son Cole's 2012 Little League all-star tryout and ends with a conversation that we had about setting goals, perseverance and the love that we share for each other and baseball.
I hope you have a few moments to check it out and click share over at Huff Post.
2013 Fall Championship game
Winner of the Gold 2013 Mom's Choice Award
I can't tell if I'm more excited to share my book on a big stage or to see a picture of Cole playing baseball on the front page of HuffSports, on Opening Day.
Life Is Short, Laundry Is Eternal is available at Amazon.com and everywhere that books and eBooks are sold.
Excerpts from Life Is Short, Laundry Is Eternal
"The cold was remarkably piercing. I found myself hoping that we would get through security quickly so that perhaps the excitement of the day would provide us with some artificial warmth as we waited at our seats for the festivities to begin. Politics aside, I was very excited for Cole to be present at such a historic occasion for our country. Of the millions of gatherers in attendance, I only saw maybe a handful of children Cole’s age. I felt very strongly that this day could create a lasting memory for Cole and that he would leave the Capitol with a story that few other people his age would ever be able to claim. That’s how I felt at 7:30, anyway.At half past noon, I wasn’t so hopeful. Making it past the security gate now seemed unlikely. We had traveled baby step by baby step for the last five hours, and even though we could now see the gate, it still looked to be farther away than we could traverse in thirty minutes. I began to feel sad. I had gotten Cole so close to this, and he was going to leave completely disillusioned and unfulfilled. I began to ask myself why I hadn’t left earlier in the morning; should I have been less cattle-like in my acceptance of the line; what could I have done to secure a better outcome for us? I felt like I should have tried something different. We trudged along with a defeated look on our faces, and I began to talk to Cole about managing our expectations, wanting to ready him for the letdown that seemed to be just around the bend."
This small example is from chapter 2, 'What Is a Family'.
"My father abandoned our family and my parents divorced when I was thirteen years old, but I never once considered that the man who walked out on us was anything but my father. Long after he had passed on, his departure remains one of the most devastating moments of my life. After he left, I would often in the middle of the night stand in our second-floor bathroom and look out on the road that led to our house. Even though I knew he wasn’t coming back, I’d allow myself to feel excited when the lights from a random car brightened the street. In the brief moments between seeing the headlights and watching the car drive past our house, I’d imagine what our lives would be like again if he’d only change his mind and come home. Other nights, I’d sneak down to the living room and pull out the family portrait that my mom had taken down and stuffed into the back of a coat closet. It was in a big frame, and I’d sit with it on the couch until I felt better."
Lastly, chapter 22, the night Arden was diagnosed with type I diabetes. 'Her Breath Smells Funny'.
"It was sometime around three thirty in the morning when a man we had never met before told my wife and me that our daughter had type 1 diabetes and that “her life would never be the same.” I’ve always been thankful that Arden was sleeping when we heard the news because I couldn’t stop crying. I would have been even more devastated if I had cried in front of her. They ushered us into a tiny room outside of the ICU. I hesitate to call it a room, actually, because it was a space with a door, just large enough to hold an ugly vinyl loveseat and a small table with an outdated magazine. The nurse told us that they were going to stabilize Arden’s blood glucose and then come and get us. She told us we should rest, but what I think she meant was to get some sleep now because this would be our last opportunity for rest.
Kelly and I sat down, and without saying a word or even making eye contact, we leaned into each other and fell asleep. What I remember clearest about sitting down on that loveseat was that when we leaned on each other I felt something that I had never experienced before in my life. I could feel Kelly’s desperation and grief through her skin, and I was sure that she could feel mine."
Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad is on sale now everywhere that books are sold in paperback and all eReader formats. I hope that you enjoy my confessions!
Chapter Titles:
Laundry Is Indeed Eternal
What Is a Family?
The Path to Parenthood Starts with Sex
The Nine-Month Countdown
I Thought You Were Going to Keep Him Alive?
Quitting My Job Was Like Starting Over
A Typical Day at My Office
To Think I Was Worried About Baby Vomit
I Only Dropped Him Once
A Little Help from My Favorite Books
Lunch with the Lions
I May Be Growing Ovaries
Baseball, Part I
Baseball, Part II
I Remember Having Sex ... and the Baby Proves It!
Could I See You in the Basement for a Minute?
Sleep—Get It Now
Platitudes
There’s No Such Thing as Gender Specific
Two Perfect Years
Life Has a Way of Getting in the Way of Living
Her Breath Smells Funny
The Saddest That I Have Ever Been
Learning About Our New Reality
Writing on the Internet Saved Me
His Last Chapter
Acknowledgments
Exercise and type I diabetes blood glucose control
Arden followed in her brother's footsteps last week when she tried out and was selected to play on our town's all star softball team. Yea Arden! The girls have been practicing each night since and I am learning more about blood glucose control before, after and during exercise then could have imagined.
Her second at bat.
First thing I learned is that all of Arden's activities from the past don't put nearly the strain on her system that an intensive two hour practice/game brings to her. Arden experienced a latent low in the early hours of the morning that followed her first practice. It was nearly eight hours since that practice began when her BG suddenly dropped. I couldn't cut off the fall by suspending her basal so I woke her up to drink a juice box. Normally I can fend off lows at night with a temp basal, this was different, a more powerful drop. I was awake and ready for it because I expected it but if I hadn't been, there is no telling how low she may have gotten.
So the next night I was ready! I kept her BG a little high before bed and didn't cover a small snack after practice. This turned out to be a winning combination. Night two went well.
On the third night I tried to mimic the success from the evening before but it turned out that a new site on her leg wasn't working the way I expected. When I combined keeping her BG a little high with a small snack and a site that wasn't up to snuff, I got a high BG that wouldn't come down easily. Hindsight has me wondering if the leg site was perhaps less effective because of the large amounts of running that she has been doing, as they normally work very well.
After I moved the OmniPod to her abdomen the next few nights went as planned, however I had to put quite a lot of effort into keeping things balanced. These last few weeks haven't just proved to me that strenuous activity can cause a low but that high BGs effect athletic performance. I noticed that if Arden's BG gets too high that her speed seems to diminish (I hope that you can share your experiences with me in the comments about this). Normally a very fast runner, Arden couldn't perform as she usually does if her BG began to rise above 220. I think that I also saw a decrease in her hand-eye coordination during this elevated period.
Last night before her first game I tried very hard to keep her BG around 100 before game time. I added carbs as the game was about to begin, a few slow acting and about 15 grams of juice. I was hoping to keep her steady without going too high during the game. I was able to do this with a lot of help from her DexCom CGM and she never went above 190 but wow was it a lot of work... though totally worth it to see her have such a good time.
This first game didn't just teach us more about type I diabetes, it also gave us our first look at Arden's competitive nature in a sporting moment that she regards as very important. Arden took this game seriously, she had fun but playing well was definitely high on her list of priorities. It goes without saying but we are very proud of Arden and the extra effort that is required for her to participate makes that pride shine just a little brighter.
Your child can definitely play sports at a competitive level with type I diabetes, that fact was never in question. All you have to do is give the moment the forethought and preparation that it requires, it'll be tough at first and you may spend a night or two battling lows but once you have a system in place it's not unlike the rest of your days with diabetes. You can do this.
Have fun out there!
One of the two outs Arden recorded in her first game.