“Not Medically Necessary”

I really have a love/heat relationship with our insurance provider. We have private insurance through my husband’s employer and trust me, without it, we’d be well over $750K in debt. So in many ways, I am so thankful for it but it’s not free. With premiums, deductibles, and maximum out of pocket, we’re drowning. So when we get the dreaded package in the mail, informing us that “This claim is denied. After our review it has been determined this procedure was not medically necessary.” – It takes the wind out of our sails. Denied

Last month, Jackson needed tubes put in his ears. This is a very basic and common procedure that literally takes 15 minutes. Not a big deal, right? Well for someone who has Congenital Hyperinsulinism, it’s not that simple. The procedure requires general anesthesia (being put to sleep), which requires the patient to fast (not eat) starting at midnight before the procedure. There lies the problem. Individuals with HI, typically, can not fast for long periods of time. The nature of their disease requires carbs because they are constantly hypoglycemic. Jackson needs to eat every 2.5 – 3 hours, even over night.

17492832_10155042694115502_762686812060261926_oWorking with the Texas Children’s Hospital ENT and Endo departments – Jackson was admitted to TCH the night before the procedure. He ate a nice healthy dinner and then was put on a dextrose (sugar) drip. His blood sugar remained stable and for the first time in his life, he slept for nearly eight hours straight! He was stable enough for surgery and everything went off without a hitch.  We were discharged within 45 minutes of the surgery. The stay and surgery were a success!

This week, the dreaded thick envelope arrived from the insurance company and we now know that means it’s an EOB (explanation of benefits) along with an appeals package. Each time that thick envelope arrives, we know something else has been denied. I have appealed before and it’s not that I “can’t” do it. It’s that I shouldn’t have to fight with them when they have access to all of his medical records. It’s exhausting sending the same information, time and time again but I will, and the new fight begins and the fear of assuming $4,000 of additional debt hangs over our heads.

Welcome to Holland

In the last several months, I keep coming across an essay titled Welcome to Holland. Some people love it, others not so much, but I think it’s an easy way to put something so Welcomecomplex into an analogy everyone can understand.

Welcome to Holland

By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans… the Coliseum, Michelangelo’s David, the gondolas of Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!”, you say. “what do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy!”

The stewardess replies, “There’s been a change in the flight plan. We’ve landed in Holland and it is here you must stay.”

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrants. But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned.”

The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Sometimes I feel like I’m in both places at once and other times I feel like I’m in Greenland so far removed from everyone. The point of the essay is to say life doesn’t always turn out like you expect. I have been a parent for nearly 15 years and it hasn’t always gone as planned but even still, I never expected this journey.

When you’re pregnant everyone asks “What do you want? A boy or a girl?” – I gave the standard answer that most parents give “I don’t care, as long as the baby is healthy”. I said that so many times and of course, I meant it. With genetic testing before pregnancy, high risk appointments every two weeks, more ultrasounds than one could ever hope for, I really thought we would land in “Italy” safe and sound. I never even considered a detour.

I have probably spent too much time mourning the loss of a “typical” childhood for Jackson. I fear his childhood memories will consist of hospital rooms, being hooked up to machines, constant pokes, be woken up every night and forced to eat, and stressed out parents worried about him, about money, and everything that comes with this package – I hate that for him. But, I can’t change where our lives have taken us. I can, however, stop and enjoy all of the beauty that our “Holland” has to offer. I’ve been entrusted with two beautiful children, who love me, and make me a better (albeit exhausted) person. This journey is hard but I promise you, it’s worth it. I just hope we can stay in one spot for awhile, I’m not ready to be a “world traveler”.

Life Can Sure be Sweet

Our lives aren’t easy on most days. Five hospitalizations in the last few months have left us stressed, scared, and overwhelmed. Yet we are stopping to enjoy the sweetness in our lives. Jackson is about to be one year old!

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In the last year we’ve learned so much and met some of the most amazing people.We’ve seen our family and friends rally around us, we’ve learned to advocate, we’ve seen our older child grow and mature in her fight for her brother, and we’ve seen our “Sugar Baby” become a hero right before our eyes. No, it’s not always easy but life can sure be sweet.

Jackson has been mostly stable. A few scares here and there when his sugar drops for no apparent reason and we fight to get it back up, but I’m happy to say that has become the exception rather than the rule.

He’ll be readmitted in the next few weeks for our first Safety Fast since diagnosis. Our goal will be to fast him on Diazoxide alone to see how long he can go without eating. This isn’t a full proof method but this is one of the only tests we can do to gauge if he’s getting any better, worse, needs an increase in medication, and how long we have if he’s unable to eat before things take a dangerous turn for the worse.

So many things can affect your blood sugar; illness, pain, outside temperature, level of energy burned, to name a few. So how he responds in the hospital may not be how he responds in a “real life” scenario but it’ll give us a starting point.

Why we have “HI” hopes

Jackson was diagnosed with Hyperinsulinism (HI) September 2016, when he was four months old. After spending near three weeks at Texas Children’s Hospital in Houston, TX, we are now home and learning to manage this disease. We continue to have “HI” hopes for this disease. For a cure. For answers. For doctors to be able to identify this disease faster. For a long, fulfilling, future for our son and all of those affected by this disease.


https://ghr.nlm.nih.gov/condition/congenital-hyperinsulinism describes HI as: Congenital hyperinsulinism is a condition that causes individuals to have abnormally high levels of insulin, which is a hormone that helps control blood sugar levels. People with this condition have frequent episodes of low blood sugar (hypoglycemia). In infants and young children, these episodes are characterized by a lack of energy (lethargy), irritability, or difficulty feeding. Repeated episodes of low blood sugar increase the risk for serious complications such as breathing difficulties, seizures, intellectual disability, vision loss, brain damage, and coma.

The severity of congenital hyperinsulinism varies widely among affected individuals, even among members of the same family. About 60 percent of infants with this condition experience a hypoglycemic episode within the first month of life. Other affected children develop hypoglycemia by early childhood. Unlike typical episodes of hypoglycemia, which occur most often after periods without food (fasting) or after exercising, episodes of hypoglycemia in people with congenital hyperinsulinism can also occur after eating.

#wehaveHIhopes