Kortnie at the 2011 JDRF Walk to Cure Diabetes, Tempe Town Lake, Tempe, AZ

Friday, July 13, 2012

A chance to Advocate and Educate

A few weeks ago the Diabetes Educator at my local hospital called and asked me to come in and give a talk at a training session she was doing for some of the Nurses. The training session was going to be about the Different Types of Diabetes. The focus was mainly going to be about Type 2 vs Type 1, but she touched on Gestational and LADA as well. Anyways, she asked me to come in and give a 5-10 minute talk about what it's like to be the mother of a Diabetic and a kind of "day in the life" of managing diabetes. She also asked my permission to use a picture of Kortnie. I agreed to both. We live in a Large Community made up of Small Towns. Our local hospital is not very big and usually sends the more intricate cases down to Phoenix which is a 35 minute helicopter flight or 3 1/2 hour ambulance ride. We also do not have a Pediatric Endocrinologist anywhere on the mountain at this time.

So, this was my first opportunity to really be an advocate for my daughter in a professional setting other than school. I had been thinking about what I wanted to say for the 6 weeks prior to my talk and finally the day before I was to go in I sat down and wrote something up. I was so nervous!

Here is what I wrote up.

Good Morning, my name is Amanda, my daughter Kortnie is 8, she's had T1D for 2 1/2 years and has been pumping just over 2 years. Miss J asked me to talk a little about what it's like being a parent of a T1D. First of all, I'll tell you about a typical day for us regarding Diabetes Management.

7:19am-We wake up, her BG is 124, 38 carb breakfast, we weigh and measure all of her food, this day she had cereal and milk, we calculated and dosed her insulin, we call it a bolus
11:32am-She wants to go to a friends house, her BG is 176, 36 carb lunch, we bolus and she goes to play
2:16pm-She's 269, that's high but she's been playing outside and it's hot, we do a correction bolus
6:21pm-We're going swimming , get to the pool and check, she's 421! Wow, that's high, what should we do, make her sit out while the other kids swim? Give her a full correction bolus? Pump on or off? She seems fine, she wasn't showing any indication that she was high, maybe she was just excited that her friends were gonna go swimming with her. My husband and I decide to give her 1/2 the amount of insulin we'd usually give, take her pump off and let her have fun.
7:27pm-We always check her one hour into swimming, she's 77 now, wow, she dropped fast, I gave her 1 glucose tab, left her pump off, swimming will be over at 8
7:55pm-Out of the pool, she's 55, I gave her a juice box and put her pump back on her, go home for showers
8:41pm-Dinner time, we made spaghetti, her BG is 87, that's a good number, gave her 1 cup of spaghetti and 1/4 cup of sauce, we bolus for 55 carbs, I used a Combo Bolus, that's when I give her 65% upfront and let the other 35% "drip in" over the next 4.5 hours
9:37pm-Kortnie says she's feeling low, she's 57, We give her a juice box, but keep the Combo Bolus active
10:34pm-Bedtime for everyone, she's 154 and feeling good, I'm happy with that number
2:32am- I wake up every night around 2:30 and check her, she's 348, Dang! Spaghetti and Juice Boxes have caught up to us. Correction Bolus and back to bed
8:03am-she's 116, Great Wake Up number

We check Kortnie's BG 10times a day, we change her cannula every 3 days at least, every 3 months we make the 3.5 hour drive to Phoenix where she sees a specialist and has an A1C done, once a year we do extensive blood work and an eye dilation.

On sick days we check every 2 hours and monitor ketones. When our kids are sick we try to manage them at home but sometimes it gets away from us and we have to bring them to the ER. I realize that the last thing you want is an overzealous parent acting like we know it all, but we live with this disease every day. We just want what's best for our kids and with Type 1 Diabetes every minute counts when they are sick.

I had a closing type of statement written up but at this point they started talking and asking questions. They said that they do like when a parent knows what they want and are informed that their big issue is getting doctors to listen to them after they've listened to parents. They asked a few questions....some they asked were....How has her diagnosis changed your family? Do you utilize the glycemeic index or just strictly count carbs? They were amazed how much she fluctuates throughout the day and how much the swimming affected her and they asked about other sports. They asked about how much care she does for herself and how I'm doing at teaching her how to take care of herself. They asked about school. They asked about how we handle sweets and we talked about letting kids be kids despite their diseases. They even asked about cooking, like how do I cook and do carb counting. They asked about her pump and she got up there and showed it to them, she was a little ham, which was nice because sometimes she doesn't want to talk about her Diabetes at all.

It was a great experience and I was honored to be asked to come talk and after I left I thought of a million other things I could have talked about. I hope that Miss J asks me to come talk again sometime.

Later on that evening I heard from a friend of mine who works at the hospital (not as a nurse but something else, I think she works with the heart monitoring machines or something), anyways she talked to a nurse who was at the training session and that nurse told her that I did a great job and it was one of the more interesting trainings that she'd been to. Yay! I wish I could've stuck around for the whole day of training but I had kids to take care of, next time I might get a babysitter and sit there all day!

The nurses and I were given a poem at the training as well, I'd like to share it here. It is exactly how I feel, there is no Author or otherwise I'd post the Author's name. Does anyone know who wrote it?

A Mother's Anthem

I am the mother of a diabetic child.

I don't know what it's like to go to sleep at night and know for certain my child will wake up in the morning.

I don't know what it's like to sleep the whole night through without waking up to do blood tests on my sleeping child.

I don't know what it's like to prepare a meal without a calculator, measuring cups, and a gram scale.

I don't know what it's like to drop my child off at school and know she will always be in the charge of someone who knows how to take care of her.

I do know what it's like to force feed sugar in the middle of the night knowing I am sacrificing my child's teeth to save her life.

I do know what it's like to draw up insulin at 2 A.M. and pray to God I'm not too sleepy to make a fatal error in judgment, technique, or calculation.

I do know what it's like to sit underneath the dining room table holding my sobbing child, explaining to her, "No we can't take a break just this one time," while I inject insulin into her already bruised arm.

I do know what it's like to walk away from the pharmacy counter with an armload of supplies and realize I've just gone through another box of 200 syringes.

I do know what it's like to help my child march bravely past the juice and cookies at the school reception that was supposed to be her reward for achieving Student of the Month.

I do know what it's like to look into my child's eyes and tell her she has an incurable disease and explain to her what that means, and then to be comforted by her when I'm the one who can't stop sobbing.

I do know what it's like to love and cherish my child every minute of every day, to know that I may someday donate a kidney to her, and that if she were in need of a heart, mine would be out of the question, because it broke a long time ago.

I am the mother of a diabetic child.