Sugar Bugs

Lancets and Test StripsThey say a picture is worth a thousand words, but looking at this picture, I could tell you THOUSANDS. These are lancets and test strips from our sharps container at home. These are all from glucose checks and not even half of what we’ve used over the last few months.

To me, these are hundreds of pokes on the sweetest baby toes you’ve ever seen. These are scared moments when his sugar has dropped too low. These are late nights and early mornings awoken by his crying. These are calibrations on his CGM. Testing how new foods affected his sugar. These are from moments when he was throwing up and we didn’t know how long we had before he’d become hypo, when we were checking every 30 minutes (or less), all while rushing in Houston traffic trying to get to the Texas Medical Center. But, mostly, thankfully, these were our reassurance that he was okay. This is what our lives have revolved around for the last nine months.

wehavehihopes toesThis is us checking for “Sugar Bugs” – no idea why we started calling it that but at some point, one of us said it and it stuck. How many sugar bugs are we going to find? Let’s catch lots and lots of them! Yay!!! We found 92! Seems kind of silly but we are trying to make it a positive and fun experience. He doesn’t cry anymore when the lancet pierces his skin or wake up when we poke him at night. His big toes are so callused that sometimes getting a small drop of blood is a challenge. I remember when we first started this journey, his poor toes became so beat up and turned red with bruises.

Now, here we are, just days away from the start of our “Cure Fast” at Texas Children’s. I am so anxious. We’ve slowly reduced his Diazoxide intake. He’s gone from 9.54mg/kg to 8.18mg/kg. So far he’s doing really well. He’s had a few numbers near 70 but for the most part, he’s hanging out in the 120 range. I pray that this is a good sign. I’m scared to be disappointed because no matter how many times I tell myself “Don’t get your hopes up”, they’re up. After all, I am a mom with HI Hopes. It’s who I am. I want this so bad for him, for us. The next two weeks, I suspect will be a roller coaster of emotions but I want to know. It’s the not knowing that has me feeling so crazy. If he has to live with HI longer, or even the rest of his life, we’re going to manage, I know that, but I really pray he doesn’t have to.

My hopes are that one day the words that come to mind when I look at that pile of lancets and strips are in past tense. That they become things that we used to have to do. Distant memories as a life free of hyperinsulinsm start making new ones in our lives. How sweet that life could be. I don’t know if that’s what’s in the future for us but I’m holding that dream close to my heart and never letting go.

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.

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.