Emily's Awesome - Aetna is NOT

I'll start this with something positive, b/c the last part is not so great.

On Monday we are going to Hopkins to have Emily seen and fitted by an Orthotist for some bracing (torso and legs). B/c of her inability to support any weight with the trunk of her body or legs, they are starting to grow in ways that can be damaging to her body and even painful. It is essential we get good bracing for her. Additionally, we feel that these braces will help her sustain a sitting position at a great enough angle for her to drive a power chair. Very exciting for us. We're praying that it will all work out and Emily will enjoy some of the "freedom" that a 2-year old wants and needs. Please pray that the visit will go well.

Also - Emily's been communicating pretty well with us. Since she spends her nights with nurse Udeme, she love talking with her too. It was so cute the other day when Udeme arrived and was talking with me about something or other. Emily was in her medical chair having some sit-up time and saw that Udeme wasn't paying attention to her. She started sorta yelling for Udeme. It was like "HI! HI!" (look over here... here I am). I told Udeme that Emily was calling her and when she turned Emily just smiled, looked her in the eyes and babbled on. It was precious and Udeme felt so blessed to be wanted so entirely by little miss Emily at that moment. She's great. I'm tearing up a bit typing b/c it was so neat to see Emily express herself like that to Udeme. :*)

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I sat down to post to this bLog b/c have had a lot of things on my mind -- good things - things about what Jesus said, "when you refused to help the
least of these my brothers and sisters, you were refusing to help me." My heart has been heavy over thoughts of SMA kids around the world being discarded by their parents, the state (country), or relatives b/c of the difficulty it presents in life. People all over the world chose their own lives over the lives of "the least of these" - out of convenience, but they are also refusing Christ himself. I tell you the truth, we will care for the least of these until we breath our last breath, and Christ expects the same from everyone of us.

Along those lines (
doom and gloom part - read at your own risk b/c it may make you really mad), I am really ticked at our insurance right now. We received news today that Aetna has denied the request for Emily to get the infusion therapies this coming week for her sever osteopenia. Yet another decision by Aetna HMO to NOT pay for Emily's OBVIOUS needs. This is even worse than their original decision about nursing, based on the statement by their all-knowing medical director that "there is no skilled nursing need in the home" when we had more medical equipment than most nurses would know what to do with, no offense to the great nurses out there. :) In fact, if we take Emily to Johns Hopkins they won't even let her on the Critical Care floor b/c they say the nurses aren't trained enough -- honestly, that is what they told us one time at the ER.

Anyway, there is well documented information about Emily's
sever osteopenia and she is very high risk for broken bones. In fact, she is so high risk that the docs do not feel comfortable waiting to give her the infusion therapy we were scheduled for this coming Tue-Thur, but we can't go fwd with it b/c of cost. Thanks Aetna! We'll send you pictures and a sound track of Emily suffering if any of her bones break - I'm not joking.

Our only option is for Emily to receive this IV therapy to strengthen her bones so they are less likely to break if they were subjected to even small amounts of stress. So, b/c Aetna is more concerned about business than seeing the reality of our little girls LIFE, we have to now go through the appeal process, which can take many months to complete with no assurance of a positive outcome for Emily. What is wrong with these people?!

I am told that 70% of claims are denied b/c most people don't appeal the decisions by the insurance company. I don't know what they actual numbers are, but I really don't care either - my little girl should not have to be subjected to bullying from companies like Aetna that could seem to care less about her condition. It's maddening!

I am trying to respond, in my heart, in a way that is redemptive - but I just can't at this point. I can't respond they way I want to when someone makes an unfounded decision that makes our life more difficult than it already is -- like we are asking for more than we deserve... for a favor of some sort. We pay our inflated insurance costs, so just give us our care.

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