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.
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