Team Coleson

A couple of weeks ago, Todd & I attended the awesome JDRF Austin Chapter’s Type 1 Now Conference in Austin, Texas. I learned a lot that day, but two big things stuck with me. Part 2 is about the second big thing I learned:

Make use of the data these amazing technology devices give you. The trend is what is most important.

Making use of technology… there are some incredible devices available for people living with T1D, which are only as good as how you use them and the data they give you.

Coleson has been on an insulin pump for a couple of years now. We are good at using it properly and we are consistently achieving better and better glucose control overall. We’re not too good at analyzing the data it collects on a frequent enough basis. Sure, we have quarterly endocrinology appointments, which force us to look at the data. Yes, we occasionally upload the numbers so the diabetes team at his endocrinologist can make changes when things are a little out of whack. But we are technology people – WE should do a better job of analyzing the data more frequently. It’s VERY simple to use and takes just a few minutes. So why not? I could list a thousand excuses, but really we just need to make it happen.

Coleson initiated getting a Continuous Glucose Monitor, which is yet another device attached to him, which gives him/us his blood glucose readings real-time in order to give him even better diabetes management.

Coleson’s Dexcom G4 Platinum CGM: The important part is the trend.

Before the CGM, we would test him a few hours after dinner and he’d be on the low or high side of the range (80-150) and we’d have to wait to test him again, to see if his blood sugar going up or down, in order to make a good decision about what to do. The CGM shows you those trends with continuous real-time data. It has alarms which trigger based on your settings to alert you for highs/lows.

Sweet, right?

But I can’t seem to trust it. Totally.

Dexcom G4 Platinum CGM

I still feel the need to poke his finger to see if it’s really right. How will I EVER sleep through my night time check and trust this device? I might. I might not. Okay, I probably will never trust it over night. But I do need to learn to trust it during the day time or what’s the point in using it? Coleson wants to trust it. He is very sensitive to “how he feels”… so why not trust it more?

We attended a talk the night before the conference, by Tom Brobson, JDRF National Director, Research Investment Opportunities, where he discussed the Artificial Pancreas, which is a closed loop system containing an insulin pump and a CGM – a technology solution to help those living with T1D function like they have a normal working pancreas. AMAZING. I also attended three sessions at the conference by Dr. Steve Ponder, pediatric endocrinologist with Scott & White Healthcare, about various topics. The re-occuring theme between these sessions and Tom Robson’s keynote address made a big impact on me:

Make use of the data these amazing technology devices give you. The trend is what is most important.

Dexcom Studio software – stats, trends and more.

Making good use of the data… well, that started right after the conference. So far, so good. Accepting the trend is what is most important, not the actual number, is a work in progress.

Learning to trust it will come… maybe.

A couple of weeks ago, Todd & I attended the awesome JDRF Austin Chapter’s Type 1 Now Conference in Austin, Texas. I learned a lot that day, but two big things stuck with me. Part 1 is about the first big thing I learned:

It’s time to trust Coleson to handle his over night care sometimes and let go { a little bit }.

Daytime care… we started including and trusting Coleson to make decisions on his daytime management about a year ago. He’s really the leader now (although we’re still in the equation). We trust his decisions. He is REALLY good at making these decisions. But then nighttime comes… and we’re still handling all overnight care and decisions while he sleeps peacefully. Like a kiddo should.

Overnight care… that’s a little bit tricky for parents of kids with T1D. Their blood glucose numbers one night can be great and the next night can be a ride on a scary roller coaster that you did NOT want to get on.

Every night Todd stays up (he is a night owl anyway) to check Coleson around 3 hours after dinner and sometimes again some amount of time after, based on what he discovered at the first check. Then I get up sometime between 1-4am and check him again. On days when I leave at 5am for the gym, I even check him again… for peace of mind. A little OCD I know. When Coleson was diagnosed in the hospital, they told us eventually the overnight checks will stop. After a few weeks at home I quickly realized I will test that kid nightly until he leaves for college. Why would I ever not check him? It takes less than a few minutes and it’s the only way to be sure he’s safe.

This is why we now host all sleepovers pretty much.

One session I went to, A Parents Journey by Moira McCarthy, really enlightened me on how to accomplish the task of trusting Coleson to handle his over night care and letting go… a little bit. Moira, through great humor, spoke about raising her daughter, Lauren, diagnosed at age 6 to become a successful 21-year-old young woman. Some of the highlights for me…

- Make use of all of the great technology out there… starting with a phone.

- Don’t expect perfection.

- Learning to let go (a little… yes, you still check them) and trust Coleson with more freedom will prepare him to be successful at taking care of himself.

But, the biggest thing I learned from Moira was:

- Take diabetes out of the equation and let him do anything I would let him do if diabetes wasn’t in the picture

and then figure out HOW to make it happen.

I left that session determined to work on these things. We must get to where he can go to sleepovers, camps not specifically for kids with T1D… and eventually yes… college. College – in just 6.5 years!! I know in my mind I can’t go with him. So, it’s time. Time to start learning to trust Coleson, empower him… and let go. Even if it’s just a little bit for now. Step 1 is getting him a phone, which we’re working on now.

Look for Learning to Trust… and let go. Part 2. tomorrow.

Last night we made build-your-own personal pizzas. Coleson ate his along with green beans… about a 30g meal and then off he went to watch a high school basketball game with a friend. As I tucked him in bed, he proudly told me how he chose to get a diet soda over Recess Peanut Butter cups at the game. We discussed how it would’ve been fine to have either one, but his thinking through choices was excellent. Kiss kiss, goodnight.

Todd checked him at midnight and his BG was 110, so he gave him a full juice to make it through the night. When I checked him at 2am, his BG was 56. I ran down the stairs, grabbed a juice and 3 peanut butter Ritz Bitz (about 21g of carbs) and ran back upstairs to wake him up. He sat up quickly (he’s actually been waking up on his own for lows some now, so I don’t think he was in a deep sleep – yeah!!) and ate the crackers so fast and drained the juice. Then, he looked at me and said, “I’m starving”! I asked him if he though it was because he is low or because he’s really hungry. Needless to say I went back downstairs and picked 1 peanut butter patty girl scout cookie (7.5g of carbs) and 1 half carton of vanilla muscle milk (3.5g of carbs) and took them back upstairs. I told him to pick one. He chose both. BOTH. It’s 2am and he basically just ate a meal!

Then he said, “yeah, I really wanted a hot dog at the basketball game”.

I am pretty sure I looked like a deer in the headlights. He went to bathroom to rinse his mouth out well – braces now, so everything is definitely “stickier”. When he came back, I hugged him and told him to eat the hot dog AND Recess peanut butter cups next time! Clearly the boy needs to eat more… not at 2am. Kiss kiss, goodnight. Again.

And for those who read Todd’s post about “Cookie Monster Shows Up At Midnight”… “Cookie Monster” was fast asleep in his own room, totally missing out on the peanut butter patty at 2am. Shhhhh…. don’t tell him.