Dear Mr. President

Every month we get several medical bills or E.O.B's (Explanation of Benefits) from our insurance company.  Since we have long met Mia's deductible for 2012, we no longer get an itemized list for each bill, we just get a statement showing the amount billed to our insurance.  For several months we've been getting a statement showing an amount that I couldn't pinpoint.  So finally I broke down and called the medical supplier the other day.  Turns out, we have been getting billed (or in this case, our insurance has) for a liquid oxygen docking system.  Ok, for all those heart parents out there that have had kids on oxygen, you know what I'm talking about.  And anyone that was in our home while Mia was on oxygen, you more than likely saw this massive tank sitting in her room (see example below).  See that big metallic tank sitting next to elderly man in this picture?  Yep, that's what I'm talking about, not hard to miss.

Mia was on oxygen for about a little over a month after her second surgery.  We had to get a "discharge prescription" or discontinuation from our doctor in order for that tank to be picked up from our home.  I think I would kind of notice if it was still just sitting around.  Yet this medical supplier, let's call them "Sapria" just for kicks, does not seem to believe that we no longer have it and so they continue to bill our insurance.  I even had our cardiologist herself, bless her heart, call them today to tell them it was discontinued long ago.

So, Mr. President, if you just happen to be reading this, please do something about the health insurance situation in our country.  It is not MY fault that the medical supply company did not record this pick up correctly on their end.  Therefore, it should not be MY responsibility to fix it or MY money to pay for something that we no longer possess.  The insurance company, the medical supplier, or anyone for that matter is more than welcome to come search my home to see that I did not simply misplace a gigantic oxygen tank somewhere.  I am very diligent about my daughter's care and anything to do with her insurance and I was trying to be responsible by bringing this mishap to someone's attention.  In return, I may as well have been called a liar because I was not believed when I explained that we no longer have this equipment in our home.  There have been days in the past, and I know there will be days in the future, when my daughter has to fight for her life.  On those days and all other days, I should not have to worry about fighting with an insurance company, I should be worrying about giving her strength to fight through another day.  

Future

I've been thinking a lot lately about Mia's upcoming surgery and quite frankly, it scares the crap out of me.  I know of 3 other heart warriors that have earned their angel wings in the past couple of months and while I try to look past the thought that those children aren't Mia, the fact is, they're similar in many ways.  Mia's third open heart surgery, the Fontan, should be her last for many years.  We can only hope that it is.  And while that is an extremely comforting thought, I find myself constantly wondering, but what if?  Then my thoughts turn to a place that I hate and fear takes over.

Yesterday I had to go to the pharmacy to pick up some of Mia's many medications.  On my drive home, I was thinking about how unfair it all is.  I haven't thought that way in awhile, but knowing her surgery is coming quickly, the dark cloud now looms.  No matter the fear, no matter the unknown, no matter how unfair I feel like it is, I have to be strong for my little girl, her big sister, and my wonderful husband.  I have to treasure each day and I have to have hope.  I have to let my fears out and keep the hope inside.

Peaceful Christmas

We had a wonderful Christmas this year!  Izzy was so excited and it was so much fun to see Christmas through a child's eyes.  Everything was exciting, everything was new, everything was magical.  And it was so heart warming to see her sharing those experiences with her little sister.  We've all been fighting a horrible cold and it decided to stick around and join us for Christmas.  Mia had a temperature of over 102 on Christmas Eve and all of us had runny noses.  But we didn't let that bring us down.  We enjoyed every minute of the holiday and for us, it's not over.  On the 23rd we celebrated with Art's family at his parents house.  On Christmas day we enjoyed a large family gathering at his aunt's house.  We will end our Christmas celebration this weekend at my parent's house.  A week long Christmas this year sounded exhausting when we were planning everything, but it has been a lot of fun!

December Check-Up

After a slow & snowy drive this morning, Mia & I made it to Children's Hospital.  Her check-up went very well.  They were able to get some really good echo pictures.  That hasn't happened the last 2 or 3 times we've gone.  Our cardiologist reported that Mia's heart function looks great!  Such good news.  Her valves and aorta look awesome as well.  They were unable to get good pictures of her Glenn surgery and her pulmonary arteries this time around (which is an area that there is concern in).  Mia has to basically arch her head back so they can get high up on her neck, in addition to laying still and not crying.  Ha, not easy for my curious 14 month old or any 14 month old for that matter.  So we'll try again next month.  All in all, it was a successful appointment!

Tomorrow

Mia has an appointment at Children's Hospital tomorrow.  Even though it should be an uneventful appointment, it stresses me out.  Every appointment does.  I don't think that will ever change.  Mia has been doing so well that there really have been days here and there when I forget that she has half a heart.  However, when we have to go to the hospital for an appointment, it's staring me in the face.

Even with that stress awaiting me tomorrow, I'm so lucky.  I've thought about that a lot the past few days after the horrific incident in Connecticut.  No matter how stressed out it makes me, I will drive to Denver as often as I need to if it means that I get to keep my little girl.  And when I get home, I will be so thankful to hear about the day that Izzy and Art spent together.

Growing Up Too Fast

Several months back Izzy learned to ride a tricycle.  Honestly we're not sure where she learned it, possibly at school or she randomly figured it out on her own.  One day she couldn't ride it and the next she could.  Art and I were so excited that we did what any proud parent would do, we went and bought her a brand new, two wheel, princess bike with training wheels.  Much to our surprise, she loved looking at the bike, but was terrified to ride it.  It has been sitting in our garage ever since.  Suddenly today, Izzy sees it in the garage and tells me she wants to try it again.  And the results...well see for your self!

Follow By Email

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