Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions such as: How can I strike the balance between caring and hovering? Will she ever be able to eat sweets again? How will I ever be able to let him go out on his own?
This is the latest in our occasional series from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.
Name: Brynn Owings
Location: Blue Springs, Mo.
“It’s been such a hot summer, and that’s why he’s drinking so much.”
“He’s soaking through diapers like crazy with all that he’s drinking!”
That’s what I said for several weeks last summer about my sweet Brody. He would gulp down a sippy cup of milk or water in no time at all, and then cry for more immediately when it was gone. He would wake in the middle of the night screaming for a drink. He would wake up completely soaked through his diaper and jammies, even with a middle-of-the-night change. At one point, he was even wearing two diapers.
I called his pediatrician’s office on a Wednesday, knowing something wasn’t right. They agreed that Brody was probably just drinking so much because of the heat. But they told me that if he didn’t improve in a week, to call back and they would test him for diabetes.
I remember being SO angry they would even suggest such a thing. No one in my family has diabetes. My BABY does NOT have that!
That Saturday, we went to the Royals baseball game. Brody had a diaper change right before we left the house, and by the time we got inside the stadium about 30 minutes later, my husband looked at me and said, “He just soaked through his outfit!” We agreed to call the pediatrician back on Monday, but we didn’t make it that long.
The next morning Brody woke up and had blood in his diaper. We drove straight to Children’s Mercy Hospital, told them about the blood in the diaper (which was unrelated and no big deal in the grand scheme of things, but it’s what got us to the hospital), the excessive drinking and his soaking through the diapers.
A short time later they came in and said they were going to test his blood glucose. 564 mg/dl. Normal for a child his age, we learned, is between 80 and 180 mg/dl. The nurse said, “He has type 1 diabetes” and left the room.
We looked at each other in shock. “He had a lot of Sweet Tarts at the game last night,” I remember telling the nurse. Still, it shouldn’t have been that high. The next few hours and days were a blur: a night spent in the PICU for DKA (diabetic ketoacidosis), IVs, learning how to count carbs and check blood glucose and give shots to my poor, sweet baby.
That was on July 21, 2013. Brody was just 15 months old. His whole life, and ours, had just changed forever.
We hoped to get Brody on an insulin pump right away, per the doctor’s recommendation, so he could get the tiny doses his little body needs. Insurance denied it. They wanted six months of out-of-control blood glucose readings to justify it. The doctor wrote a letter of appeal. Insurance denied it again. I called insurance daily, sent Brody’s logbooks, had our case manager do a personal review on his behalf. They denied it again.
We started having fundraisers, selling “Brody’s Diabetic Dinosaur” bracelets, anything we could think of to raise money for the pump. Fundraising and fighting insurance went on for six months, until they finally “approved” it. This was after the beginning of the year, when our deductible had started over—so with a high deductible, it still cost us the same amount. But at least the supplies were less expensive.
Brody started using the Animas Ping pump on Feb. 19, 2014. It is so nice to be able to let him eat whenever he wants without having to give him a shot. We are able to give him much smaller doses, instead of guessing too much or not enough, which has helped his numbers greatly. We still struggle keeping his blood glucose in control, but Brody is a growing boy, so it will be ever-changing.
We are so proud of the courage Brody has shown over the past ten months. He will pick which finger to test and hold it out for us. He will take the meter from me and try to test on his own, and he also tries to test all his stuffed animals.
He knows, and correctly uses, words no 2-year-old should have to know: pump, site, sugar check, ketones and diabetes (he says “’betes” with a pitiful pouty face). He loves Mickey Mouse, fishing, going on boat rides, playing outside and baseball.
We are so grateful to have Kids With Courage, a local support charity for families of children with type 1. It’s amazing meeting other parents who know how you feel, what you’re going through and how hard it is, who can just listen when you’re having a bad day. It’s both heartbreaking and wonderful to see so many other children struggling with type 1. It gives me hope seeing how strong they are, how they play sports and excel in school, how they choose fundraising birthday parties over presents.
As Brody gets older, he will be able to see that he is not alone. That he is awesome, he is strong and he can do anything because he has something amazing . . . COURAGE!