Wednesday, March 6, 2013

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"
 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:
" 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


  1. What a ride.

    I know there's nothing to say that will really make things better, but for whatever it's worth, I'm thinking of you guys. Hang in there.

  2. I know I'm dodging the bigger story here, but I love how they had a great time, love how the sisters care for one another, and love how you and the family KNOW you are - and will continue to be - awesome.

  3. Sorry that 200 number had to pop up and rain on your parade. How completely suckastic.

    I'm glad you guys got to make a fun time of it... Arrgggh, matey!

  4. this is giving me shivers. i didn't see this post until now.