Refill accomplished

What every T1’s fridge butter compartment should look like:

A thing of beauty

What we won’t be doing again: signing up for auto-refills, because for some reason they box is into a rigid 90-day refill schedule. If we refill manually we can do it after about 70 days.

What no one should ever be faced with: a ridiculous retail price of insulin. This is so wrong. Thank goodness we have GOOD insurance.

Down to the last vial

This is gonna be close. Next refill is on 12/8. One vial was opened today, not pictured. There is one more at school. And this last one in the fridge.

V has been going through ridiculous amounts of insulin. Puberty is largely to blame for her skyrocketing insulin needs. Add to it sometimes forgetting to bolus, which results in being stuck on high BG, which then takes even more insulin to bring down. Add hormonal surges when insulin is like water for a couple of days. Her insulin prescription was increased last time (to from 9 to 12 vials per 90 days!!!) because we were dangerously close to running out. Oh, and a couple of months ago she dropped a nearly full vial and it shattered. First time it ever happened! So now we have one less vial than we were supposed to and it’s making me feel increasingly uneasy.

This is new territory for us. We always had at least one or two unopened vials before refilling prescription. We always had a bit of a cushion. We should be ok. If I’m doing my math correctly. If she doesn’t drop another vial. If she is more mindful about bolusing on time. If hormones semi-cooperate for the next couple of weeks.

If it looks like we will be running out before refill is available I’ll reach out to the Endo. I’m sure we will find a solution and make it work somehow. But in the meantime it’s making me very, very uneasy.

World Diabetes Day

From the T1 parents point of view…

Picking up your phone to check her numbers 

First thing in the morning, straining to keep eyes open

Before checking weather, email, or news

And smiling at a beautiful steady line

Or jumping into action to bring it back

It is waking up to alarms when she sleeps through them

Walking across the hall to her room to give insulin 

Waking her up indvertently 

Sometimes again and again and again

It is hours spent at doctors’ appointments

And even more time spent on the phone

With insurance, medical suppliers, pharmacists

To make sure she has what she needs to stay alive

It is gratitude for having access to insulin,

Supplies and new technologies

That help her thrive, not just survive

And anguish for families that struggle

It is a wrenching punch in the gut 

A brutal reminder of “what if”

When you hear of another life lost

Another person diagnosed too late

Or rationed their insulin, or never woke up 

It is gratitude for family and friends

Who rally around you, support and care for you

Invite her to sleepovers, feed her healthy foods

But do not withhold dessert from her

It is receiving another email from your mother

About a breakthrough cure for “sugar diabetes”

Because she cannot fully accept that there is no cure 

It is growing thick skin and patience 

To field questions, comments, unsolicited advice

“But you are not fat”, “But you don’t look sick”, “Did you eat too much sugar?”

She has heard them all by now

It is making it look easy sometimes 

Just treat and move on, roll with the punches

Helping her live full, unrestricted life

Walking the fine line between supportive

And micromanaging, intrusive, helicoptering

Crossing that line, starting over again

Every day.

Adventures in teen looping: expectations vs reality

November is diabetes awareness month. I blogged every day in November in past years. I don’t have it in me to do it this year but it’s a good reasons to at least write something here and there.

So, looping… For those who don’t know, looping is a DIY system created by a few genius T1 peeps and parents, that allows a small device called Riley Link to establish communication between insulin pump and CGM, so that it can automatically adjust basal insulin based on CGM trends. You gotta do a bit of work. I needed to do very basic coding, following amazingly detailed instructions, and built an app that loaded on V’s phone. Now instead of using her pump’s remote control she uses the phone app.

This is the set up with phone app and Riley link

I’ve waited for a long time for Loop to be compatible with Omnipod, so when it happened late spring we quickly jumped in.

Now, some loopers have amazing results. Their BG stays almost a flat line no matter what they do. But it takes a lot of work and dedication to dial in all the settings first. And it helps when people have predictive schedules and eating habits, and lean toward lower-carb diet. With a teen, we have chaotic schedule, higher carb diet, and stupid puberty hormones that constantly mess things up. Besides, teen’s cooperation to test settings is required. It’s easy enough to test overnight basal rates. But everything else that requires, during waking hours, either fasting and/or very careful and methodical consumption of exactly measured carbs to observe BG response to insulin, good luck!

Actual footage of my teen when I ask her to test settings

So, when we started looping I was aiming for two things: better and consistent control at night and decrease of burden. Improved A1C would be a bonus but not necessarily required, since it was already reasonable. I was not dreaming of straight lines. Good thing I wasn’t because we aren’t getting any! But we are getting the two primary goals accomplished.

Most nights are great. V stays and wakes up in reasonable range. Highs and lows still happen, but they are less frequent and less severe. We all are sleeping a lot better!

Last night’s graph. Started with a low that was caused by over-correcting earlier, but bounced back nicely and stayed in range all night.

V spends less time thinking about diabetes because Loop does a lot or work for her. When it predicts a low, it reduces or shuts off basal insulin, so it often results in “soft landing” in the 70’s or 60’s and then back to target range without needing to treat.

Loop has been suspending insulin for a while, so a bad low was avoided and BG recovered nicely by itself.

When V forgets to bolus (which happens more than I’d care to see), Loop tries to compensate with extra basal. What would easily be 400-500 BG without loop becomes 300’s.

Busted! Didn’t bolus till 1 hr after the meal. Loop working hard to compensate.

Still bad but much less bad and easier to get under control. Plus V loves using the phone instead of the clunky PDM.

And her A1C dropped 4 points without putting any more effort into Diabetes management. Sweet bonus.

So, no flat lines for us, especially during the day. But we are still better off with Loop than without it. And V’s endo is very supportive.

We’ll take it!