January Check-Up

Mia had her appointment at Children's today.  I'm happy to report that the appointment went great and we were able to get some echo images that we haven't been able to get the last few months!  They were able to see her pulmonary arteries, which is our biggest area of concern right now.  Our cardiologist didn't think that there was any further blood restriction than what they saw in the MRI that Mia had several months ago.  Ahh, huge sigh of relief.  We were half expecting that Mia would need to have a sedated procedure in February, and we were reassured today that she will NOT need to have one done.  Ahh, another huge sigh of relief.  So as of today, the plan remains that Mia will have a cath done in May/June and her Fontan (3rd open heart) in August/September.  We will still be going to Children's monthly until then.  Now I can hopefully rest well until her appointment next month!

Unconditional Love

Izzy is sick with the stomach flu...again.  We just cannot get healthy this year.  As she lay on the couch watching movies all day today, Mia walked around the house looking lost.  She didn't have her sidekick to play with.  Every once in awhile she would go in the living room, point at Izzy, and say "Ow."  To which I would reply, "Yes Mia, Izzy is sick, she has ow."  The look on her face as she said that was of genuine worry.  The love that our two little girls share for one another is unconditional and simply precious.  Izzy tells me quite regularly how much she loves Mia and how she'll be Mia's big sister forever and ever.  They have a bond that they will never have with another person and it melts my heart to watch them together.

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.