Birthdays are the perfect time to reflect on those important to our lives and are a chance to show how much we appreciate them. So today, I'd like to send a very special shout-out to someone who means so much to us. He's not really into celebrating things like birthdays, as he prefers to go about his day as usual. He's a bit of a workaholic you see, and even if we threw him the biggest birthday party ever, he would work right through it. Because his job, and the people he works for, are the most important things in his life.
And if he's really lucky, he'll get a chance to play... ...with a squeaky ball
HAPPY 2ND BIRTHDAY
SCOUTY WOMPUS!!!!!!!!!!!!!!!!!!!
Scout is our two year old yellow Labrador. His training began when he was only a few weeks old, and in February he came home to live with us. Scout is my youngest daughter, Sarah's, diabetes alert service dog. His job is to let Sarah know anytime her blood sugar drops below 85 or climbs above 185. And he's a champion at his job. While he's basically on the clock 24/7 (which limited exceptions when they're apart for short periods), Scout gets a lot of play time, cuddle time, and attention. You can follow the adventures of Scout and Sarah here: https://www.facebook.com/ADiabetesServiceDogForSarah
Scout watches over Sarah as she sleeps
Watches Sarah checking her blood sugar
Evening is fun time
Playtime makes everyone happy
Scout is better behaved than most boys in junior high
He carries the bringsel to tell Sarah to check her blood sugar
Watches over Sarah when she's sick
"Sarah, you're low!"
"Sarah, you're high!"
A great listener
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And if you just haven't had enough of Scout and Sarah by now, check out this video created by Canine Hope for Diabetics when Sarah brought Scout home. It has PUPPY pictures!!!
Sarah loves theatre. Loves it. To her core. It's what she's about FARRRRRRR more than needles, and insulin and ketones and carb counting. In fact, I'd say that theatre grounds her. Theatre makes her happy from the tips of her toes to the end of her long hair.
I honestly think theatre is one of the main reasons that diabetes has so little affect on her.
So I have to tell this story, because Sarah will never forget this night as long as she lives. Last night was one of those experiences that you can't plan for, can't create, you can only hope that once in a lifetime something like this will happen and you'll be ready.
Sarah is currently playing in a local junior version of Willie Wonka. She's one of the ensemble members, so she plays a "candy kid" and an "Oompa Loompa". There are probably about 40 of each, so it's a large ensemble and they sing and dance primarily between the main scenes with Charlie Bucket, Willie Wonka, and the bratty kids that accompany Charlie to the chocolate factory.
I was at work when I got a call from the producer of the show at about 2:30pm. The girl playing Veruca Salt is at the ER, might not make it to the show. Can Sarah prepare to play Veruca? - Of course I knew Sarah would do it, she can't tell Anne-Marie no. But I also know Sarah is a planner, and does like her time to get into a role and make it her own. Those who have experience with Sarah being "on the spot" know what I mean!
I called Sarah and explained the circumstance. Her first worry was for her cast member, of course, a delightful and talented young girl who Sarah has been in several shows with. But of course Sarah agreed to take her part for the show that night if needed. She started pouring over lines and music, and I rushed home from work early to get her to the theatre so she could learn her blocking and dancing.
By the time we got to the theater at about 4pm, Sarah had nearly all the lines committed to memory (yeah, pretty sure no one is EVER going to excuse you not being off book early in the show, ever again...). She started working on learning the blocking and dancing. She had her game face on like I've never seen, and was all business.
I was a little worried about her blood sugar. Extra anxiety and adrenaline can do strange things, and as Sarah is usually very calm and prepared, we haven't seen many anxiety/adrenaline issues. 1.5 hours prior to the show her bg was 131 with no IOB. I put her on a -50% temp basal (which means I turned her background insulin to half of what it normally is), and an hour later she was down to 75. I instructed the director to instruct her (I was selling snacks) to turn her basal off entirely for the show, and give her a little snack.
And that was it. Sarah went on with the show and if the producer hadn't told the audience about the cast change, no one would have ever known she hadn't been preparing for 10 weeks, but for 4 hours.
I've never been more proud of my little girl.
This video shows Sarah learning the dance about 2 hours before she would perform to a sold out house:
And this video shows Sarah performing it for the audience:
All I can say is "WOW"! I don't think many people could have done what she did. And I am beyond impressed with her ability to focus and learn this and perform it under these circumstances.
12:37 and I've stayed up watching Grey's Anatomy simply because I know if I sleep I might not hear the alarm.
She was a perfect 129 an hour ago, with no food insulin working, or so I thought. But now she's 82, and it's kind of funny because I'm probably around 82 and that's completely and perfectly healthy. I check the meter to see the amount of extra insulin she has; i.e. the amount that would have brought her from 129 to 82 for no apparent reason. 0.46 units.
Okay. Math time...
She gets .65 per hour this time of night to keep her blood sugar stable, through that lovely blue insulin pump that both keeps her alive and constantly reminds me that my baby girl's life is in my hands.
I'm her personal physician. I should get a degree, a white coat, a little black bag (do they still carry those?).
Is there any other disease that turns ordinary moms into doctors overnight? Is there any other disease where parents are handed a drug (technically insulin is a hormone, but whatever) that is so potent it can kill? Seriously, what's up with that?
Of course, what's our other choice.
And so I get hooked on one show after another so I have something to keep me from falling asleep so soundly I won't hear the incredibly annoying alarm I installed on my phone.
And I do math at 12:37am.
.45/.65 = .70.
And so I reduce her basal insulin to -.70 for one hour.
And then I blog because watching another episode of Grey's anatomy while I wait seems like gluttony. Am I rambling? I think I might be.
Eh, it's all good. I got to hold my teenagers hand at 12:37am. Okay, so I made it bleed, but still. How many parents of teens get to hold their child's hands while they sleep? So I guess I'm a lucky doctor, er mama.
I wanted to write a whole "one day" narrative to illustrate how Sarah's day with diabetes went, but I'm so tired after a pretty rough weekend of crazy bg's that I can only remember the highlights. So just think on this.
Sarah pierced her skin with a sharp metal object 15 times today, intentionally.
I'm pretty sure she doesn't actually enjoy that; I know I don't. She bolused for a Frappiccino at Starbucks which should have made her bloodsugar high, but instead she dropped to 78, then 61, then 59.
I laugh (somewhat maniacally) whenever someone asks me if we've got her diabetes under control, if we're managing it. Diabetes is like a rattlesnake, only the rattle is silent. And it's in your bedroom. It blends with the carpet so well you never see it but you know it's there, just waiting for you to step in the wrong spot or turn your back.
Tonight I completely expected to be dealing with highs, after a birthday party including the evil cake. But instead I'm venting my thoughts while I wait to check that the bg of 74 I caught 10 minutes ago is coming up. It's been over three years and diabetes still throws me a lot of curveballs.
And yes, they're fanged and venomous
Control is a myth, a daydream, a fleeting moment when all seems right.
It's 11:44pm, and I'm doing my best to stand in for a lazy pancreas. And my best is all I can do.
I've had a few people ask me about this, so I thought I'd throw it in a blog. My disclaimer. I am most definitely not a doctor.
I'm a mom.
I'm a decision maker.
I'm a pseudo pancreas.
So this all started a little over three years ago. The second type 1 mom I ever met scared the living daylights out of me - and one of her horror stories (she told a few) was how her daughter (who I believe was around 8) had teeth so rotted they were falling out of her mouth. Why? Because she was so frequently treating low blood sugar with frosting and other sweet gooeyness. Okay, well honestly that whole teeth rotting out of the mouth didn't really sound appealing, so, as soon as Sarah started on the insulin pump, I started experimenting.
I found that SOMETIMES, when her low wasn't TOO low, when she had only a SMALL amount of IOB (insulin on board), I could resolve a low without using any carbs by lowering the basal rate to essentially match the remaining IOB.
Example: I check Sarah at midnight and her bg is 84, and she has .3 IOB. Her hourly basal rate at that time is .6 per hour. So instead of waking her to eat, I set a temp basal to -100 (turn it off) for an hour. I usually check 15-20 minutes later to make sure she isn't still dropping. If she's much lower, I will wake her to eat or drink something, but if she's holding steady or rising, I won't.
This has gotten SO much easier since we got Scout because he lets us know when she's trending down, usually starting in the 90's, which gives us LOTS of time to act.
So while I wouldn't necessarily suggest this, it's how we handle lows probably 60% of the time. It works for us when done safely and with extra monitoring. It does mean a little less sleep, as I probably have to stay up longer to confirm her bg is back into the happy zone - but so far (knock on wood) she has no cavities - and this makes me happy. Because diabetes is not supposed to be a teeth rotting disease, but really who treats lows at 2am and then makes their kid get up to brush???
Back in January I went online to order insulin for Sarah, and the website told me that we were no longer eligible to purchase Novalog, and would instead receive Humalog. Okay, good to know. A little warning from Kaiser might have been nice. So I asked people who have previously made the switch if I was likely to see any difference. The responses were basically:
"No, they're identical"
"There's a slight difference"
"There's a huge difference"
"Humalog is like water, doesn't do a thing"
I had a stash of Novalog in the fridge, so we started with the Humalog on 3/13/2013. And here's our experience, based on the first week of the month and the last week of the month, so a week before we started Humalog, and our full second week on Humalog.
Glucose in range
Pre-Humalog: 76% in range with 15 over and 9% under
Humalog: 68% in range with 38% over
Average Glucose
Pre-Humalog: 142 average
Humalog: 177 average (and keep in mind that this required a LOT of extra insulin)
Average Insulin
Pre-Humalog: 29.1
Humalog: 35.5
And in case you're a visual person...
Pre Humalog (on Novalog) - 3/1 to 3/8/2013
Change to Humalog - 3/25 - 3/31/2013
So our conclusion? Humalog definitely isn't working as well. We have been CONSTANTLY increasing both basal rates and IC ratios, and I've reduced insulin sensitivity twice. I reduced duration from 3 hours to 2.5. We're still dealing with highs, no matter what we do.
You know what I want? I want a REALLY smart pump/meter/bolus calculator that learns. Wouldn’t that be amazing?
What if you could tell the device what you’re eating, and based on your pre-meal bg and post meal bg, it could better anticipate what you need next time!
Example:
Bg 120
Insert bowl of ice cream, 30g – regular bolus for carbs, say 3units (IC: 1:10)
1 hour later – bg 82
3 hours later – bg 140
4 hours later – bg 180 – correction given
5 hours later – bg 240 – Correct again
Next time you eat ice cream, what if you enter the food, and that it’s 30g. And your device remembers what happened last time and suggests something like:
Dose 4.5 units
Combo bolus 60/40
3 hours
And based on however this goes, the device makes adjustments for the next time. I think it’s going to be awhile before we have a cure, but why couldn’t someone invent a device that remembers types of foods, results, and provides advice based on past experience.
Just saying, but whoever is smart enough to make this happen would probably make a killing, and have the adoration of parents all over the world...
