One of the heartbreaking issues we examine in GHOST HEART is the financial, physical, and emotional strain parents face when caring for a critically ill child. These dedicated parents make it their mission to become as medically informed as some doctors when it comes to protecting the welfare of their child.
We’d like you to meet Kim Gilson, a single mom of two boys with the potentially life-threatening disease of juvenile diabetes.
1. Thanks for sharing your story with our readers, Kim. Tell us about your youngest son Cade. Two weeks before Cade’s 1st birthday, I read a letter to the editor in Parents magazine about juvenile diabetes. One week later, Cade began to show symptoms that had me very puzzled and that article kept nagging at me. He was peeing excessively, breathing rapidly, sleeping constantly, and losing weight. Finally, on a Friday afternoon, I realized we needed to get in to see our doctor before the weekend. I grabbed my mother and a credit card and we headed out. The doctor agreed to check Cade for diabetes but said it would be the youngest patient he’d diagnosed in his years of practice. He came back and told us that Cade did have diabetes, was very sick, and needed to be admitted to Children's Medical Center immediately.
2. Mother’s intuition is a real thing, huh? What was your biggest fear when you heard the diagnosis? Cade was in a diabetic state called DKA, which has a 10% mortality rate. Death was a very real possibility. There was also the danger of brain damage. I will never forget when the doctors told us he was finally out of the woods, I asked, “He'll grow out of this right?” Learning that he would have it the rest of his life or until someone discovers a cure was sobering.
3. Describe some of the insurance hurdles you’ve faced. Our family has been very fortunate in that we have had good insurance, especially compared to many we have known. But even so, 2012 was a particularly bad year for us. Cade had to have a new insulin pump and Trent, our oldest son, was diagnosed with diabetes and had a hospital stay. That was also the year I’d decided to switch our coverage to the low premium/extremely high deductible and out-of-pocket maximum option. Thankfully, when Trent got his insulin pump, I learned that when you have two children on a pump through Medtronic you get a 20% discount! Now that the boys are in college/high school, I pray they pursue careers that offer good benefits when they’re out on their own. Keeping up with the financial strain meant I had to learn all about insurance benefits, co-pays, deductibles, and the difference between a flexible spending and an HSA account. It’s unfortunate that you don't typically learn that information until you are in a position of desperately needing it.
4. What were some of the experimental offerings? Did they work? What did you think each time you had to make one of those hard choices about letting them use your son as a guinea pig? Cade was the first “little kid” at Children's to go on insulin pump. It was life altering and allowed him to live a more “normal” lifestyle while still maintaining good control. The upside to the expensive pump was so exciting that making sure he got one was an easy decision!
5. What kind of toll did Cade’s condition take on your family? Having a one-year-old on insulin was like bringing home a newborn. We would set alarms to take turns checking his sugar in the night. I always had trouble going back to sleep! We were exhausted for several years. When the boys got old enough to go places with friends or have sleepovers, it was extremely stressful. Despite our constant fear, we felt it critical that they lead normal childhoods, even though it was easier and safer to keep them home with us. The worry is still always there. The boys often do not feel the same sense of concern, and some of that is good. You don't want them to live in fear but you also need them to have a healthy respect for the illness that kids don't really want to address.
6. So, what did you think when you found out your oldest son had the same condition? We were shocked because Trent’s diabetes was caught early, before he had any symptoms. His pediatrician caught it in routine screening because she’d been watching him closely. While not what I would have wished for him, it was a much easier adjustment because we already knew how to manage the disease and Trent had seen his brother deal with it so much that he really knew what to expect. We knew the medical bills would double!
7. As your oldest son prepares to leave for college in a few days, how does turning his health care completely over to him make you feel? He’s got the latest insulin pump which both reads his sugar and adjusts his insulin. If he will use the technology, he should have no issues. He is actually much more stable than Cade. But at the same time, his health does add a layer of concern to him leaving the nest. I worry about the crazy schedule, eating, and his general health. He’s going to do marching band, for Pete’s sake. But at the same time, I don’t want to say I don’t think you should do something because of diabetes. I never want to stand in the way of my boys living their lives.
I hate to tell you this, Kim, but I don’t think mother’s ever quit worrying about their kids. But you’re right, we never want to stand in the way of them living their lives…thus the reason we’ll do whatever it takes to make sure they can be successful as possible.