Monday, June 12, 2017

Reenactment: Teenager Set Change


I don’t usually post about teenager stuff, but this post is written with permission by my 13 year old.

When you read it, you’ll see why.

Saturday morning I was woken up by said 13 year old. He had filled his reservoir and asked if I’d be willing to pop his set in. He’s not a big fan of the “popping it in” part, and insists it doesn’t hurt as much when I do it. When I’m not around, he does it…but it was Saturday, so…of course.

I was not quite awake, but I cleared my fuzzy brain best I could and popped it in whilst still lying down.

I could see the relief on his face. “Wow. That was a really good one!”

After this he went to eat breakfast.

The following is a transcript of what transpired next:

“Why the two arrows up on the Dex? Did you bolus for breakfast?”

“Yes, Mommm! I bolused!”

An hour later.

“Kid. Still two arrows up and now you’re in the high 300’s.”

“Do you want to check my history? I bolused! And I bolused BEFORE I ate.”

“Well, give yourself a couple extra units. Maybe you didn’t bolus enough.”

"I'll give myself four extra units. Chances are good I'll eat a granola bar soon."

An hour later his Dex said “High” with an arrow up.

"Did you eat a granola bar?"

"Nope."

"Did you eat anything other than breakfast this morning?"

"Nope."

“Did you bolus for breakfast before or after the set change.”

“After.”

“When I popped your set in, you looked really happy. Did you even feel it?”

“No. It was amazing," he said whistfully.

“We’re going to have to put in a new set. This one must be kinked.” I began to get up off the couch when I felt him grab my hand.

With both his hands cradling mine, he looked hopefully into my eyes...

“Mom. Listen. That was the best set-change in three months. Please don’t take that away from me...”

“And that’s why it has to be changed. It probably isn’t good. You’re over 400.”

I don't look back but I feel the twang of a glare hitting me in the back of my head.

I insert another set and gently peel back the old one to see if it was bad.

It was perfect.

“Crap.”

“NOOOOO! I can’t believe it. I knew it was good! Oh my gosh. Apology. I think this deserves an apology.”

“Not so fast. This still doesn’t explain why you’re going so high. Why did you change your set so early this morning? Was it low reservoir, or out of insulin?”

“It didn’t SAY ‘no insulin.’ You know, with words.”

“How many units did you have left?”

Silence.

“It said ‘- - -‘ didn’t it.”

“Yes. It did.”

“Why didn’t you change your set when you got the low reservoir alarm?”

“Mom. It was Midnight! I was tired!  Besides, it said I had 2.9 units left.”

“Dude. Your basal rate would eat that up in an hour and a half.”

“12 units? Really??!”

“You said 2.9 and now you’re saying 12.”

“It’s all the same.”

“Do you know what your basal rates are? Do you even know what a basal rate is? Your pump gives insulin even when you don’t push buttons. If there is no insulin to give, you get ketones….OH MY GOSH. You probably have ketones! That explains it!”

“I know what basal is, and I don’t have ketones.” (eye roll)

“Oh. We’re checking!”

As I take out the Blood Ketone Monitor he says,” This is a waste of a ketone strip. It’s going to say I’m 0.2”

“Oh, we will see!”

We watch the monitor count down, and at the end of it? 0.2

“Crap! I mean, Awesome!”

“Apology. I want an apology!”

“DUDE. I want an apology! You didn’t change your set last night when it said Low Reservoir!”

“IT. Was. MIDNIGHT. I was really tired.”

“You know I’m going to blog this right. This is blogging gold.”

“Go ahead. I was tired. Is that a crime?”

“You can’t live without insulin, kid. Diabetes doesn’t get tucked in at midnight. It devours insulin 24/7. Diabetes doesn’t sleep!”

“I’ll apologize if you apologize. You took out the perfect set.”

“If you want me to apologize for being an awesome D Mom, then yes, I apologize.”

“It didn’t need to be changed! You need to apologize for changing it!”

“I did what I had to do. I was trying to keep you safe. I won’t apologize for it. You on the other hand…”

“I had 2.9 units! There was insulin in my pump when I went to sleep!”

“GIVE. ME. YOUR. PUMP.”

He hands it over defiantly.

“Your basal rate right now is 1.65 from midnight to 4am, and 1.85 from 4am to 9am. Puberty demands a ton of insulin. Now lets do the math. 1.65 units for three hours is 4.95 units of insulin. Add that to the next five hours at 1.85 per hour and that is 14.2 units of insulin needed while you slept last night. Take away the 2.9 you said was left, that means there was 11.3 units that was not delivered that your body needed.”

There is a long thoughtful pause, and then he says with a far off look in his eyes, “Whoa. It’s official. I’m a teenager.”

He threw himself into my arms and gave me a long hug. "I'm sorry mom." 

I whispered into his ear. “I’m still blogging this.”

He whispers back. “I know.”


Wednesday, June 7, 2017

A life of "probably"


I’ve lived in this world of “probably” for the last 19 years.

“He’s probably ok.”

“He can probably get through the day safely.”

“He’s probably going to go low.”

“He’s probably going to need extra insulin.”

“That’s probably enough food.”

And every single morning when I open my eyes:

“He’s probably alive.”

I’m aware that nothing in life is for sure; in fact that is how I survive my life of probably…

But my “probably” and a family’s “probably” that doesn’t have children with a chronic disease live on completely different “probably” planes.  Our percentage of ideal outcomes very widely.

Type 1 Diabetes is one big fat probably.

Nothing ever is for sure; meaning random variables are always present.

“My children are going to probably live through the day.” It’s a truth for every parent. It’s an ever-present reality for me.

That is why the Dexcoms my boys’ wear have been life changing for me.

I wake up in that cold sweat in the middle of the night, wondering if I slept through my alarm, and in that very instant I can look at my phone and see that all is well. I can glance at my phone in the middle of a movie and see if my boys at home remembered to bolus for their dinner. I can be driving and look at my watch and know that my college student is safe.

I can see if their sugars are trending up. I can see the double arrows down indicating quick action is needed.

I can breathe better, because those moments when I have to hold my breath are fewer and far between.

How can I convey the monumentality of this?

After using Dexcom for 6 months our insurance denied our reorder.

This has never happened to me before. Our family has always been extremely blessed to have insurance that would pay for everything, and have doctors that would know exactly what to say to make sure things got covered.

And here I was facing the end of those extra breaths. I knew we could survive without it, obviously, but I also knew our quality of life was better with it.

Or maybe it’s fairer to say, MY quality of life was better with it. I can’t speak for my teenagers.

But for me? To have the background worry paused every now and then brought a soft breeze of normalcy that I haven’t been able to enjoy for a long, long time.

I didn’t take the Dexcom numbers for granted. I knew they were a gift. But now to have that all taken away?  (Cue “it isn’t fair” rant.)

But thankfully, I had met a new friend last month willing to pass along some sensors.

And thankfully too, Dexcom called us because a friend had passed them along this tweet.


Also thankfully, our new Endocrinologist here in Indiana is a fighter and even though it took almost 6 weeks…I’ve received word that the Dexcom supplies have been approved for all three boys. 

Though nothing is just that easy. I called the pharmacy to see if they’ve processed the order and they said they are waiting on a fax from our Endo with the approval. I messaged our Endo and they haven’t actually received the approval yet. They received it verbally, but not in writing.

It will probably work out.

The problem with “probably” is it’s not a passive thing.

Probably takes constant effort, there is no sitting back in a big comfy chair, forgetting about Diabetes and expecting everything to “probably” be ok.

The fates don’t have any control in the direction of my teenagers’ blood sugars. Only effort and thought does.

And with the Dexcoms, it takes a lot less effort, and a lot less thought…for my boys.

For me, it has enabled my position as my boys’ PDS. (Personal Diabetes Secretary.)

It’s a job I’ve recently taken on to help my struggling teenagers out.





I’m probably annoying them.

But when I remind them, they take action.

And that is a big win.

Thank you, Dexcom.

I hope with all my heart that we’ll (probably) never part.