T1D is a life-threatening autoimmune disease in which a person’s pancreas stops producing insulin, which the body needs to get energy from food. It strikes both children and adults suddenly and is unrelated to diet or lifestyle. Managing the disease requires constant carbohydrate counting, blood-glucose testing, and lifelong dependence on insulin. With T1D there are no days off, and there is no cure.
For several weeks, Hattie had been drinking a lot of water- more than double her usual amount. At first we attributed it to her being a growing 2 year old as there were days she also couldn’t get enough to eat. There were days that she hardly had an appetite, too, which we attributed to her being an unpredictable two year old. Then she started waking at night asking for a drink. She would quickly drink a glass of water and immediately ask for more. We would change her wet diaper, knowing it wouldn't hold until morning. In the morning she would still wake with a full diaper, plus wet pajamas and sheets. She was also looking skinny, but again we thought maybe she was just growing taller and losing her "baby" weight. After she came down with a cold she couldn’t shake, I grew frustrated and called her pediatrician for an appointment on Tuesday, April 9. The office didn’t have any open appointments that day, so I made an appointment for the next morning, April 10. That day, Hattie wouldn’t eat and was lethargic – nothing like her normal self. We tried to get her to eat anything we could – I think she ate a couple popsicles and a chocolate shake that day. Although we didn’t mention it to each other, both Brock and I knew that increased water intake was a sign of type 1 diabetes. As soon as we mentioned her increased water intake, our pediatrician said we should test for type 1 diabetes. One finger prick and an eternity later, he came back to confirm our fears – Hattie’s blood sugar was too high for the clinic’s meter to read – she was diabetic. He immediately sent us to the ER at Blank Children’s Hospital for treatment and education.
We spent one night in the PICU at Blank and two nights in a regular room. Hattie had an IV in her left hand giving her fluids. While she was in the PICU she also had an IV in her right elbow so they could draw blood every hour. Boards on her hand and arm prevented her from moving and disturbing the IVs. We met our pediatric endocrinologist, Dr. Cook, and her team of nurses and educators. They were, and are wonderful to work with. We left the hospital overwhelmed, nervous and scared but armed with the tools and some of the information we would need to help us manage Hattie’s diabetes. Over the next two months we had several appointments with Dr. Cook’s team to learn more about T1D and we are still learning a year later!
A day in the life of Hattie:
Hattie wakes up – or we wake her by a certain time if she’s not up on her own.
We prick one of her fingers to test her blood sugar.
She gets a 24 hour-acting insulin shot in her bottom.
She eats breakfast (it’s really exciting if we have something yummy like cinnamon rolls or donuts!) We count the carbs that she ate and figure up how much rapid-acting insulin she needs.
She gets a rapid-acting insulin shot to counteract the carbs she ate. This shot can be in her bottom, leg, arm or stomach. We let her choose where, and she normally picks her bottom.
On preschool days she has a morning snack at preschool. Her teachers send a note home with her that lets us know what she had for snack, which helps us understand why her blood sugar is what it is before lunch.
It’s lunch time! We test her blood sugar by pricking a finger again.
She eats her lunch and we count the carbs that she eats.
She gets a rapid-acting insulin shot to counteract the carbs she ate at lunch. Again, it can be done in her bottom, leg, arm or stomach…but is typically done in her bottom.
Two-Three hours after lunch we test her blood sugar by pricking a finger, and she has a snack. What she eats for snack depends on what her blood sugar is. If she’s high, she gets a sugar-free popsicle and some low or no carb items (like cheese, meat, nuts, peanut butter or carrots). If she’s lower to normal range she will have some crackers or a similar snack to help keep her blood sugar up until dinner time. A snack with no shot - Yay!
Dinner time! We again test her blood sugar by pricking her finger.
She eats dinner, we count the carbs she eats and she gets a rapid-acting insulin shot to counteract those carbs.
Two hours after dinner it’s time for bedtime snack! We test her blood sugar by pricking her finger. Just like her afternoon snack, her bedtime snack depends on what her blood sugar is. She always has ½ cup of milk before bed (a mix of chocolate and white!) and typically some type of cracker (goldfish, graham cracker, cheeseitz, etc.) The protein in the milk helps stabilize blood sugar, which is especially important overnight. If her blood sugar were to drop too low she could have a seizure, go into a coma or possibly die. At night we are sleeping (hopefully!) so it is hard to monitor her condition or behaviors to prevent a dangerously low blood sugar from happening. That is why bedtime snack is so important.
At some point in the middle of the night we get up and test her blood sugar to make sure she will be OK until morning. Sometimes we get up more than once if her blood sugar was unusually high or low before bed or if she had an exciting or active day. She usually sleeps through the night time finger pokes.
We also test her blood sugar any time we think she might be low (if she's been active, excited or is acting "off".) If her blood sugar is less than 80 she needs a quick pick-me-up (usually juice). When she has a low blood sugar she is often hungry, tired, shaky or a combination of those things.
There are several things that contribute to her blood sugar numbers. What she eats, when she eats, activity level, illness, and hormones are a few factors we have to watch. It's a lot more complicated than what I would have thought before Hattie's diagnosis!
In total Hattie receives 4 shots per day plus at least 6 finger pricks to test her blood sugar! We think we have a very brave little girl!!
A bit about JDRF:
One in 250 kids are diagnosed with T1D and that number keeps increasing. JDRF is working every day to change that. As the largest nongovernmental funder of T1D research, every dollar JDRF directs toward its research plan comes from donors like you. JDRF is the only global organization with a strategic research plan to fight T1D. Every donation, big or small, allows JDRF to fund the critical research needed to find a cure. Will you accept the challenge to make a difference by joining us? Just click “Join This Team” to become a team member and start fundraising. Or click “Donate to This Team” to make a donation.
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