Take Trois: Livie's OGTT

 

Last September, Livie had her first Oral Glucose Tolerance Test (OGTT) because she tested positive for autoantibodies.

 

She was 143 at the 2 hour mark and less than 140 is considered normal.

She missed qualifying for the oral insulin trial by 3 points.

 

In January we repeated the OGTT and she passed with a beautiful 124 at the 2-hour mark.

 

 Because she had that darned 143 in September, the oral insulin trial required her to have 2 normal results within 7 weeks of each other.

 

So, last Sunday we packed up the kids and headed down to Orange County for Livie's OGTT test at CHOC the following day. CHOC is about 2 hours from our house, so the wonderful staff set us up with a stay at the Orange County Ronald McDonald House.

 

The next time you are at McD's, please drop a few bucks into the Ronald McD house box because those places are wonderful. I cannot tell you how the ability to drive down the night before and stay in a beautiful room with home-made cookies made this experience so much easier. I was so grateful for the opportunity and so thankful for the volunteers and donors who make that place possible.

 

Since Ella was diagnosed, I decided come hell or high water that we were going to make this life with diabetes fun. And Livie's OGTTs are no exception. So Sunday night we took the kids to see the Pirate Dinner Adventure Show in Buena Park. They loved it. And the chicken wasn't bad, either.

 

The kids convinced us they needed foam swords and rubber band guns to make the experience truly authentic.

 

 

We cut Livie off at 8:00pm and had a heck of a time getting her to go to sleep without her night-time warm almond milkies. But sleep she finally did and woke up angry & nasty. So angry & nasty that she resorted to sucking on all of my floss.

 

 

Fast-forward to the OGTT because that's where it really gets fun. Starting BG was 61. Oddly low, right? No wonder the poor kid was sucking on floss. Ella wrote Livie a sweet note on the chalk board:

 

In case you can't read second-grader, it says:

I hope Livie is all right! I hope she does not cry! I hope she is not hurt. I love you. 

 

IV insertion was OK because we used the "magic princess paste" otherwise known as EMLA cream, and she sucked down her "yummy fruit punch" faster than a diabetic with a low blood sugar can eat a tub of chubby hubby ice cream. And then she fell into a deep sleep.

 

 I never learned the art of delaying gratification so I always ask for a drop of blood so I can check how she's doing with my accu-check nano.

 

She was in the 80's at the hour mark...yeah!

She was in the 120's at the 90 minute mark! sweet! we got this nailed! woot! woot! Bring it, OGTT!

 

So imagine my surprise when I saw 203 flash on the meter at the 2 hour mark.

 

"Give me another strip"

 

212

 

 And that familiar lump formed in my throat. And I could feel the tears stinging at my eyes. And I looked at the nurses and I could see the looks on their faces. And I think I said:

 

"But HOW?"

 

And then I thought to myself:

 

"McMomma...pull yourself together"

 

Because Ella and Livie were both in the room and I was not about to lose it. 

 

So I said something to the effect of:

 

"Okay...so you'll call us when you get the lab results and we'll talk next steps. OK, kids - let's go get some lunch and then we're off to the Discovery Science Center."

 

And off we went and the kids had a great time.

 

And I didn't want to talk or think about it until we got the lab results and until I knew what it all meant...I mean, I know it means her pancreas is sputtering, but what does it really MEAN?

 

Last Friday the phone rang and it was Dr. Daniels, the lead PI of the trial.

It's never good news when it's the doctor and not the research nurse calling.

 

And they confirmed that my accu-check nano is damn accurate.

Lab results were 214 at the 2-hour mark.

And I finally asked the question:

 

So what does this mean? Does this mean she's diagnosed?

 

The answer is no.

Because she's asymptomatic. And because her A1C is still awesome (5.2).

And because until we have a failed OGTT AND something else, there's nothing we can really do but sit and wait.

 

I've been doing random 2 hour post-prandial checks on her at home and I've seen everything from 93 to 199. She's all over the place, which is probably to be expected when you have a sputtering pancreas.

 

Sit and wait.

Nobody knows how long.

But I am still open to the possibility of a miracle.

C'mon miracle.

I'll take you in any way, shape or form.

 

In the meantime, I'm doing surprisingly OK.

I think hearing that she was autoantibody positive was the worst for me.

That phone call was AWFUL.

 

I don't know what the future holds.

But I know this: whatever it is, we'll be OK.

 

No, we'll be more than OK.

We'll be awesome.

 

My awesome kids, kickin' it with Ronnie McD

 

Oral Glucose Tolerance Test Take Two

Last September, Livie had her first Oral Glucose Tolerance Test because she tested positive for autoantibodies. 

 

She was 143 at the 2 hour mark and less than 140 is considered normal.

She missed qualifying for the oral insulin trial by 3 points.

 

THREE MEASLY POINTS

 

So last Wednesday we tried again.

 

Starting Sunday night, I carb-loaded her as if she was preparing for a marathon.

Pizza, bananas, pasta - if it had a lot of carbs, she ate it.

Momma wasn't messin' around this time.

 

Wednesday morning I loaded her arms up with "Magic Princess Paste sent from Cinderella that protecsts  skin from ouchies" (aka EMLA cream) and we headed down to Children's Hospital.

 

The last OGTT was horrible. Horrible. We had to wrap Livie up in sheets & hold her down to get the IV in. And the nurse missed the first time, so they had to repeat on the other side.

There was a lot of screaming & bribery involved.

 

This time was so different. The nurse was amazingly calm & had such a way with Livie.

 

When she asked if she could test her blood sugar, Livie held out her hand, stuck up her little finger and announced:

 

"I BRAVE"

 

Yes, baby girl. So brave.

 

Fasting BG 77. Off to a good start.

Time to get the "shot" (IV).

Livie was sitting in her daddy's lap and she start shaking. I took her little left hand in mine and she extended her right arm to the nurse. I shielded her eyes with my hand, turned her face into mine and told her the story of Princess Livie and her new purple dress.

The nurse was an angel. She nailed it the first try and when it was all done, Livie said, with surprise:

"It didn't hurt! I didn't feel it!"

Thank you, Cinderella, and your princess paste. Thank you.

She sucked down the "yummy fruit punch" and then snuggled into Daddy's lap and watched the new Lalaloopsie movie she got at Christmas...twice...lah lah lah, lah lah lah... 

 

 

 I brought my trusty Accu-check Aviva with me so I could get some real-time info because in this day & age waiting a week for lab results is just torturous and last time it was only 1 point different from serum results.

She was 150-something at the 60-minute mark. Eh.
She was 174 (we checked twice) at the 90-minute mark. Ack.

And then, perhaps sensing that I was going to have a nervous break-down if they didn't wake up and get to work, her little islets of langerhans kicked into overdrove for a beautiful 124 at the 2 hour check.

At which point Livie screamed: BANANA.

 

 Then we took her to "HotDonalds" for her post-OGTT Treat

 

 Where DD indulged in a nasty McRib seeing as how it's only available for a limited time.
I declined his offer to "try a bite."

 

 So what does this all mean?

Well,  once we get the real lab results back we should also get a profile that tells us much more about her risk factor. Right now all we know is that she is in the "highest" risk category. Thanks a lot. I need numbers. I need a timeline. My brain doesn't operate off of "most likely sometime in the next 10 years."

Second, because her first OGTT was abnormal, the oral insulin trial requires 2 normal OGTTs in a row. However, because I work in clinical research I know there's this little thing called a pre-enrollment eligibility deviation where the doctor can submit, on your behalf, a request for a waiver from certain inclusion/exclusion criteria. In Livie's case, the 3 measly points could very easily be attributed to standard lab deviation. So, fingers crossed it gets approved and we don't have to put her through another OGTT.

Third, it means I go crazy while I wait. Wait for results. Wait for when the big IT is going to happen. I am driving myself insane looking at her & wondering how many more days, nights & holidays we have left with her as a non-diabetic. I feel like ever since we got the initial TrialNet phone call I've been in this downward emotional spiral and I don't know how to stop it.

Yes, Tom Petty: The waiting IS the hardest part.

Oh don't let it kill you baby, don't let it get to you
Don't let it kill you baby, don't let it get to you

The problem, Tom, is that I don't know how to not let it get to me.
I'm desperately trying to figure it out.

Because I get this text in the middle of writing this post:

 

And I shove smarties into my child's mouth when she should be sleeping.

And I worry about the cavities.

And I worry if it's enough sugar...or too much.

And I worry what if she'd already been sleeping. Would she have woken up?

And she says she feels the low in her heart, but not in her fingers yet.

And not in her brain yet.

And I think:

 

Dear God WHY does she even have to deal with this??? 

 

And my heart breaks.

 

And I don't know how it will possibly manage when there's two.