THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Showing posts with label #dexcom. Show all posts
Showing posts with label #dexcom. Show all posts

Tuesday, July 17, 2012

#FFL12: Poolside Dex Checks.

I was standing by the pool, waiting for a group I had planned to meet when I saw a cute little family   checking things out.  After being greeted so kindly by several people during my first experience at FFL, and feeling pretty confident this family was in town to attend the conference, I approached them with a smile in hopes that I could help them feel welcome.


Before I could say anything, however, she looked at me and said "You're Candy Hearts!"


(This is always surprising to me whenever it happens, btw.  I'm honored and humbled to know our family has so many supportive friends out there...so please, please, please {!!!} feel free to say hello anytime, because we really do enjoy meeting you guys!!)


I smiled back, and asked about the two cutie-pie girls with them.  Before I knew it, one of the girls was showing me her pump and pulled out Dexcom...I swear sometimes I think all little girls are the same -- she reminded me so much of Sugar just a couple years ago.  


With Dexcom in plain sight, my new friend let out a deep sigh, and mentioned the mixed blessing that comes with all the information a CGM provides.  I completely understood.  The arrows are awesome when deciding how to proceed from one minute to the next, but then there's a punch in the gut when you see the glaring peaks and valleys.  She pushed a button, and I saw the familiar pattern of rolling hills ....... cruising up ....... and down ....... and up .......


"It's so bad.  I can't believe I'm showing you how horrible we are at managing her diabetes."


"What?  You're not horrible!  This looks totally normal to me."


"It does?"


"Yup."


"But she spikes so high, and sometimes it takes forever to come down, and..."


"Normal."


She pointed to a spike...


"Normal."


And another...


"Yup."


"But people don't ever post pictures like this!  I never see Dexcom pictures online that look like this.  I feel like I'm letting her down, and can't figure out how to fix it."


*DING DING*!!!!


Oh, my friend.  I have been there!!!  I can completely relate to the feeling that everyone else seems to have their act together, except you.  And so, because I want to reassure you that you're doing a great job, here's a few pics I dug out to prove that we have days like those too...




And, guess what?  


We aren't the only ones!!!!






You aren't alone, my friend.


Pinky promise.


PS (I'll be adding more links as I find them, so feel free to stop by again!  If you have a related post, please leave a link in the comment section so I can add it!)
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Saturday, January 7, 2012

Anatomy of Her GlucoCoaster (Along with the Apidra 6 Week Review.)

Apidra has been going well.

Really well.

You might remember that I had a moment of crazy, and randomly filled Sugar's insulin pump with Apidra on Thanksgiving night.  It was 2 days after her last endo appointment...which happened to fall right smack dab in the middle of a perplexing rut of blood sugar madness.

That's always fun.  There's nothing quite like showing up for your endo appointment with practically nothing except 400's to show for the previous week.

Anyway, it's been about 6 weeks now...which means we're about 6 weeks away from our next endo visit.  In this pic you can see that her averages began dropping between the 60 day and 30 day marks.  I'm crediting the improvement to Apidra since the 6 week point falls in there somewhere.

851 finger pricks divided by 90 days = 9.4 tests a day.
In the past 6 weeks, we've rarely seen a BG over 300.  Since changing insulins, her overall average has dropped nicely into her ideal target zone of 80 - 150.  I do believe we're seeing the proof in the pudding that Apidra is a more effective insulin for managing Sugar's diabetes. Obviously the true test will lie in how well her numbers do over the long haul, but I'm definitely encouraged.

So, with all that being said...

Diabetes can be a flipping SHREW sometimes.

I present Exhibits A, B, and C - Z:


That was 2 days ago.

Since I'm a "seize the moment" type of girl, I snapped a picture to help me break down the zones, and get to the nitty gritty of how the anatomy of these numbers look from my viewpoint.  

GREEN LINE -- The area just above this line tends to bring a little shakiness, along with hunger. The areas below this line, however, can cause combativeness, confusion, and loss of consciousnesses.  She becomes ravenous once she begins to recover, and often wants to take a nap.  If we cannot bring her blood sugars up quickly using fast acting sources of sugar, she's at risk for a seizure, and her life could be in immediate danger.  She may require an emergency glucagon injection.  Before starting the pump in 2007, Sugar used to pass out from low blood sugars pretty regularly.  It was horrible, horrible horrible.  Thanks to the ability to program an intermittent ZERO basal rate into her regular pattern, keeping close tabs on Insulin On Board, and administering micro doses via her insulin pump we were able to put a stop to these horrifying episodes.

WHITE LINES -- Coloring between these lines brings (me) euphoria.  I think she feels "normal" in this range...sadly, however, I'm not sure she really knows what "normal" feels like.  In this range, she's upbeat, positive, and smiles almost all the time.

YELLOW LINE -- Around the yellow line, she tends to feel a little lazy and distracted.  If she's doing something that interests her, she acts pretty normal - otherwise, she's easily bored.  She might drink a little more water, and tends to ask for repeated snacks, especially if she hangs out in this range for any period of time.  We don't particularly like to see numbers in the 200's, but they're not something that cause much frustration unless we can't seem to bring them down. We'll try up to 2 correction attempts and then a site change, unless she's continuing to climb - in which case, we'll change the site sooner.

ORANGE LINE -- Up in this range, she's definitely thirsty and needing to use the restroom more frequently.  She has a terrible time concentrating, and her handwriting becomes pretty sloppy. She's usually trying to eat anything she can put in her mouth, including a crumb or two from the countertop.  She gets emotional, and often starts crying for no apparent reason.  She's easily irritated and often complains of a headache.  Sometimes she says her tummy hurts as well.  We'll usually attempt a correction via the pump one time as long as no ketones are present.  If there hasn't been a significant improvement within 2 hours, we'll change the pump site using fresh insulin.

RED LINE -- At this point, she's downright cantankerous.  She wants to eat, drink, and stomp her feet.  She becomes incredibly emotional, and cries easily.  Her head hurts, her tummy hurts, her eyes hurt, her legs hurt.  She's dying of thirst, and can't seem to get enough ice cold water. She's downright miserable, and usually needs to lay down to rest for awhile.  If she continues climbing, or stays in this range for very long, she's at risk of DKA, which can progress to coma or death.  This area is managed with an immediate correction via injection, and a complete site/insulin change.

I don't know what it feels like to have a BG under green or up in red.  Since she doesn't wear Dexcom full time, I'm often wondering what direction her numbers are moving.  Assuredly, I would have changed her site on this day when she was 350ish and then climbed to 450ish. With those Dex arrows, though, I knew she was going to be okay.  

I see these sharp rises and falls, and stand in awe of how well she handles them.  You'd never know from looking at her that she was having a day like this.  After 6 years of witnessing how difficult some most of these ranges can be for her, I'm just amazed at how awesome she is.


More on our APIDRA experience...
The day we started.
The experience.
The trial end.
The 6 week review.
The verdict.
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Thursday, April 14, 2011

I have so far to go.

And, to be quite honest, I'm not exactly sure where to go from here.


I couldn't breath.
I couldn't move fast enough.
I couldn't get up and down without losing my balance.
I couldn't do one. single. push up.


My shoes weren't tied tight enough and started falling off when I was trying to sprint back to baseline.
My back hurt.
My foot hurt.
My head hurt.


My spirit hurt.


For the most part, I stayed pretty quiet for the duration of my first BodyBack class.  


Partly because I was afraid.
Partly because I was overwhelmed.
Mostly because I thought I'd cry if I opened my mouth.


I weighed in at the highest weight I've ever recorded for myself.
That was at the beginning of class.
I felt like an avalanche of failure from that point on.


Dragging myself to that class was the first step, I guess.


And, at the end, when the instructor announced that it wasn't even half of what I could expect in the weeks ahead, I was pretty sure that I'd end up humiliating myself...as if I hadn't already.


As is the case every night, I got up in the wee hours of the morning to check my sleeping child's blood sugar.


I kept hearing the instructor's words...emphasizing the importance of a good night's sleep for success...and couldn't help but to wonder if I'm just doomed to fail -- again.


When I walked in her bedroom, I knew something was wrong.  Dex was laying on the floor. Obviously it had been alarming and vibrated itself off the table.




Words can't describe the pit in your stomach, when you see that on the screen...how long has it been like this?  How long has it been calling for someone to come help her?   


Glancing at that trend graph, I got my answer.  And it wasn't pretty.
Finger poke 45.
Juice box.
Temp basal.
Prayer.


While I waited for a better number so I could go back to sleep, I found myself circling the kitchen floor.
  
I wanted to grab some jelly beans or chocolate or ice cream.
I wanted to make the guilt of missing that alarm go away.
I wanted to feel better.


But I didn't.


I just kept circling.  Pacing.  Wandering.  
I wonder if 20 minutes of midnight shuffling counts as one of the 2 daily workouts?


Recheck -- 81.
Still not high enough.
More juice.


More pacing.


Finally 110.


I made it.
I made it through a frightening overnight low blood sugar...without feeding my anxiety with sugar.


I'll call that a victory.


Body Back® is the newest program release from Stroller Strides’ founder Lisa Druxman. Body Back is a results based workout program for moms of any age. Inspired by the Mama Wants Her Body BackDVD series, it offers high intensity, interval workouts along with before and after fitness assessments, a nutrition plan, coaching and support in a motivating and inspirational program. The workouts have been clinically proven in a University research study to help moms lose the weight and get their pre-baby body back. Moms all over the country are achieving results that they never dreamed possible. 100% of the weight lost was pure body fat!  You will see that anything is possible!
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Monday, March 28, 2011

Thank You


Here's the other half of the picture I posted of Sugar the other day.
You see, she has a strong local support system.
She knows she's not alone.
But she feels alone when she's only one in her class wearing a Dexcom.
The one beeping in the middle of a math test.
The one who misses part of recess because she has to go to the nurse.

I just wanted to take a moment to thank everyone for the outpouring of supportive comments I received after my last post.  Each one means so much to me...you guys really do understand the emotions we're dealing with and I genuinely appreciate your kindness.

I tried to bring Dexcom up with her again today.  It's not that I wanted to push her to try it again...more that I just wanted her to talk to me about what had happened at school that made her so upset.

"Mom, I can't talk about it without feeling like I'm going to cry."

WHAT?

She's SEVEN!!!!!!  Nothing in life should be so stinkin' heavy that it evokes such painful emotion.

Dangit.

Anyway, I was telling her that I told my computer friends about how sad she was the other night...and I shared some of the comments with her.  The next thing I knew, she was smiling ear to ear.

Wow.

The DOC lifted her up, just like it's lifted me up a million times before.

Lorraine and Alexis suggested a great idea to help her feel less isolated...but I'll need your help.  I'd like to collect some pictures of people wearing their CGM's (kids and/or adults) to create a scrapbook for her.  I'll also use this collection to show her class that there are many people who wear a CGM and it's nothing they need to be concerned about.  If possible, would you mind writing/having your child write a short note  finishing this statement:

I have diabetes and I am ________________________.

Then take a picture of the note and send it to me with your CGM picture.

candyheartsblog@gmail.com

I'd like to collect all the pictures by Friday, 4/1.

Thank you, my friends.

Seriously.

From the bottom of my Candy Heart,

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Thursday, March 24, 2011

It Happened.


And it caught me completely off guard.

I mean...I knew we'd talk about this one day...but I didn't expect to be last night.

The adhesive on Sugar's Dexcom sensor (a.k.a her continuous glucose monitor) was wearing out.  I was looking at it before bed, and trying to decide if it would make it through another night.

Out of the blue she said that it was bothering her...and then she started to cry.

Spring is in full swing here and summer is coming fast.  The long sleeved wardrobe has been packed away, and the drawers are full of bright colors, spring dresses, and short sleeved clothes.  She began wearing Dexcom in December (under long sleeves), and we've found her arm to be the most accurate placement for the sensor.

Can you see where this is going?

"MOMMY...they keep asking what Dexcom is, and I just don't know what to say."
"They were laughing at me."
"It beeped during class and disturbed everyone.  I was so embarrassed."

Oh, my heart ached.

Her tears were so big.

And then it was me who just didn't know what to say.  All I could do was hold her and tell her that we'll figure it out.

We agreed that she'd keep it in until morning so I could double check the basal changes I had been tweaking for the past few nights.

Then we took it out this morning.

And I don't know when we'll be putting it in again.

If technology enhances her life, I'll go to the ends of the earth to make it accessible to her and learn whatever I have to learn to manage it.

But if it becomes a burden....

Then I guess I won't.

P.S.  You can read a heartwarming follow up HERE.
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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.