“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!

hihopes picture.png

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.

CGM – APPROVED!

The CGM was finally approved and we love it! We had to go through the State of Texas Independent Review Organization (IRO) for a final appeal but UHC’s decision was over turned!

The reviewing doctor responded with:

This young infant was diagnosed around four months of age with altered mental status and seizures. There was concern that he had been hypoglycemic and possibly experiencing seizures for some time. He has since stabilized on diazoxide. However, despite diligence to do blood glucose monitoring every three hours, frequent feedings, and conscientious medication administration, he continues to have severe hypoglycemia spells. He is unable to communicate symptoms with his parents, increasing likelihood of severe hypoglycemia. This inturn increases his risk of brain damage and intellectual disability. Use of a Dexcom G5 continuous glucose monitoring system would allow for near continuous glucose monitoring, allowing the family to intervene as needed, preventing periods of severe hypoglycemia and reducing potential risk for brain damage. This device is medically necessary and appropriate for this baby boy.

This was a long fight that required standing over fax machines, staying on hold for hours, tons of phone calls, and possibly a few tears on my end. I’ll never understand why I had to fight so hard but in the end, the reviewing doctor understood the severity of the situation and did the right thing.

wehavehihopes cgm.pngRight now we have the CGM placed on  the top of his thigh. The first insertion was a challenge and he cried a lot but now we’re getting the hang of it. He uses an iPhone to act as a transmitter and as long as he’s on wifi (like at daycare), I can check his sugar through an app on my phone every five minutes. There are alerts for when his sugar is dropping too fast, under 70, and under 55. Definitely worth the fight.

Dr. David Paul, endocrinologist, TCH

Dr. David Paul is my next HI Achiever.Hyperinsulinism Dr Paul TCH

Dr. Paul is Jackson’s endocrinologist at Texas Children’s Hospital (TCH). We met him on day three of our hospital stay. I remember when he came into the room for the first time. He took the lead in the conversation and I stopped him. What is your name and what is your role?  Everything was a whirlwind. Doctors and nurses were in and out like a revolving door. Everything was running together and I couldn’t make sense of all of the possibilities. So when he walked in for rounds that morning, I was ready. I had a pen and paper in my hands and I wrote down everything he said. I wanted to know it all. So many things were new. So many things were unknown. I was overwhelmed and I was scared. My son was sick and I didn’t know why. I refused to Google anything. Told family and friends if they did internet searches to please keep us out of the loop. I couldn’t go down a rabbit hole. I needed facts. Dr. Paul was my main source of information. He was going to figure this out, I trusted that.

The second morning, when Dr. Paul did rounds, this is what he walked into (picture below). I realized the wall could act as a whiteboard. Our PCU nurse, Renee White, gave me a marker, and I was on a mission. You can’t see the other 5+ feet of wall to the left. I wanted to figure this out. I needed to see everything drawn out.

Hyperinsulinism Dr Paul TCH 2

Some doctors would walk in and see my board and chuckle and say it looked like I was cramming for an exam,  some would be impressed, and some didn’t notice. Dr. Paul walked in the room, saw my notes, and went through each line item, one by one, every day. He never rushed me. There were times he’d stop by after his rounds were done and sit with us another hour or more. Answer questions. Discussing research papers / case studies that I read. A doctor that doesn’t rush you? A doctor that cares what you think? A doctor who is willing to engage a mother’s Google doctorate?

I liked Dr. Paul right off the bat. You can see the wheels turning when he’s faced with complex issues. There’s no mistaking his candor or his intelligence. I tried finding information about him online and in the Hyperinsulinism world, but my search came up empty. Not that I need a doctor to have a shelf full of awards in order to be “experienced” enough to treat my kid but I was surprised that he wasn’t more highly decorated online for his achievements. Dr. Paul has been treating HI since the 90’s. He has seen and treated more kids with HI than most endocrinologist in their entire careers. So while you may not see his name in big fancy lights, he’s an unsung hero in the HI world. Certainly a hero in our world.

In the months following our initial hospital stay, Dr. Paul has continued to be a great doctor. He’s visited Jackson during other hospitalizations which weren’t endo related, humored me in answering far too many questions and emails on random thoughts that I have, introduced us to other wonderful doctors, did everything he could and made himself available when we were ambulanced to a hospital that was scared to treat Jackson (they had never had an HI kid), answered text messages when I’ve been scared over the weekend, far more than any doctor in any other capacity would have ever done.

I really can’t imagine having to go through this journey with another doctor. Trust me, we’ve meet a bunch of them. Even other experts. They were all great, fantastic even, but they’re not him. Not only has he been great to Jackson, he pushes me to be a critical thinker and honestly makes me wish that I would have pursued a career in the medical field.

Since August 2016, our lives have been unpredictable. It often feels like we’re all caught up in a tornado, twisting and turning, at an unpredictable pace and the one thing anchoring us down is him. He keeps my anxiety and fears in check, because I know my son is in the best hands possible. I can ask anything that I want, no matter how silly it may seem to me, and he’s right there to answer. Dr. Paul will do whatever he has to do to keep Jackson safe and healthy. I trust him with Jackson’s life. No better feeling in the world than that.

CGM Denied… Again

The Dexcom was denied once again after an urgent appeal to United Healthcare.

Ugh. This is frustrating. The letter stated I was out of appeals and my next step would be to get a third party involved. The reason: The FDA has only approved the CGM for Type 1 Diabetes. I’m just one mom, there’s no way I can get the FDA to help us, right?

I know insurance companies are all about the bottom line. I get that. I understand that. I really do but this morning when Jackson’s sugar dropped into the 60s without warning, we would have known he was declining if he had this machine.

To the doctor who gets to make these critical decisions: To you he may just be another “claim”, to me, he is my whole world. Please do the right thing. 

Insurance Denies – CGM

Jackson’s endocrinologist requested that he receive a Dexcom G5 Continuous Glucose Monitor. He warned it would likely be denied by the insurance company.

I seriously thought, there’s no way. How could the insurance company deny a device that could literally save his life? I have talked to the insurance company several times since Jackson’s birth and truth be told, they’ve been incredibly pleasant to talk to. No issues whatsoever.

When the insurance company denied the claim, even after prior authorization, I was a little shocked. I know, I had been warned but they had been so easy to work with, I expected more from them. I decided to call and talk to them. Surely, if they understood Hyperinsulinism, there’s no way they would deny it, right? WRONG

Their reason? “BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY”. Ok, deep breaths. So I go into a long drawn out explanation of HI, the risks and the need for continuing to monitor blood glucose levels. I try to stick with simple facts:

  • He doesn’t have diabetes, but has a disease that affects his glucose level.
  • He is severely hypoglycemic.
  • If his blood glucose level (BGL) drops and I don’t catch it, he could suffer brain damage or worse.
  • He’s six months old, he can’t tell me if he doesn’t feel good. This machine will communicate for him.
  • This machine isn’t just necessary for diabetics, it’s necessary for all people who have to monitor BGL 24-7.

That wasn’t enough justification. So in a desperate plea, I submitted an appeal. Telling them everything I knew about the disease and basically begged that they’d re-consider. Julie with Congenital Hyperinsulinism International also wrote a letter encouraging them to reconsider. Asked that they look at the facts. The truth is, if he suffers brain damage, the medical expenses will far exceed that than the coverage of this device. It’s the right thing for them to do and could save them money in the long run.

They said they’d make a determination on the appeal in 30 days. So… we wait.

HI Achiever – Angelica

Introducing: Angelica

When Jackson first starting showing symptoms and the ER doctor told us he was fine and there was nothing wrong with him. She and I both knew better. What is so odd, is before Jackson’s diagnosis, he stopped crying for food. Looking back, I think he stopped crying because his blood sugar would drop so low, he didn’t have the energy to “communicate”. I kept pushing him at home to eat and she did the same when he was with her. I told her the doctor said he was fine. In my heart, I knew something was wrong, but I seriously second guessed myself. In her heart, she too knew something was wrong. So unknown to both of us for a few days, we both were pushing Jackson to eat on a strict schedule. I really think most people would just assume, he’s not crying, no need to wake him and make him eat. Or think, he’ll cry when he gets hungry. But, not her. She’d push him to eat every three hours, giving him carbs – fueling his body and his brain, she did this day in and day out, every three hours, like clockwork. Once I got to the point where I was convinced something was truly wrong, despite what I was being told, I talked to her about it. I’ll never forget the look of relief on her face when I told her I was moving on and getting another opinion.  The look on her face was what I needed to know that I wasn’t losing my mind. Something was wrong and she agreed.

Angelicia is Jackson’s daycare teacher. I have thanked her and cried with her more times than I can count but it never feels sufficient. How do you thank someone for helping to preventing brain damage in your child? How do you thank someone for keeping your child alive? You can’t. No amount of thank you’s or tears, is ever enough. We owe so much to her.

I dread the day when Jackson outgrows her classroom. I feel queasy just thinking about it. She continues to take such great care of him. She checks his blood sugar, feeds him, is helping me to push him to meet milestones, and provides a safe place for him to learn and grow every day. I want to keep the two of them together forever. I trust her as much as I trust myself, and that says a lot.

Angelicia, thank you. Thank you for being kind, loving, intelligent, and for trusting your instincts. We’re very blessed to know you and I’m honored to be able to share my son with you.

There are plenty of great things to say about his daycare too, but I’ll save that for another day or post. This one belongs to Angelica only.

HI Achievers

I’d like to highlight all of the people and medical professionals that help guide us on our journey. There are already so many! We live in Houston, TX, with access to the Houston Medical Center. We’ve met fabulous doctors, organizations that raise money and awareness, and many unlikely heros.