As surgery approaches..

12/6/14:  The anxiety has really set in the week leading up to surgery.  As if the stress of the upcoming surgery wasn't enough, throw in an insurance battle too.  Why not, right?  Going back and forth between our insurance company and Boston Children's Hospital has been a large hurdle to get over.  It's been an un-enjoyable game of phone tag that left us hanging at the close of business on Friday, two days prior to leaving for Boston, with the words we were fearing to hear.   "Your insurance has denied coverage for the surgery."  This is after Molly's orthopedic surgeon and pediatrician both wrote medical letters of necessity to try and prove why it is essential for us to have this surgery performed in Boston.  

Our insurance company believes this surgery can be performed in our area.  Sure, someone is probably capable of performing the surgery around here, but their experience, compassion and attention to detail were not up to the standards we experienced when dealing with a doctor at BCH.  

We did our research before we made this incredibly hard decision.  Since this disorder is extremely rare, some of the doctors we saw, at the best hospitals around here, have only seen a handful of cases in their entire career.  For example, one had only operated on a single child with this disorder.  To top that off, she said, "maybe one day there will be a 'magic pill' to fix it."  "Another option would be to remove her big toe."  

And now we're being denied services to a hospital with experience with this condition?  Sure we could take the easy route and select one of the doctors in Philadelphia, making follow-ups and additional procedures much easier and less expensive.  However, our choice was to go with the only doctor we met with that has experience with this rare disorder, even though it would mean countless hours in the car and additional expenses.  We elected to do what we knew in our hearts was the right thing for our child and chose to have the surgery performed in Boston.  We're at a standstill until Monday when our doctor will be involved in a peer-to-peer review to see if they will reconsider.  We will no longer be leaving on Sunday as there is a chance we will still be denied. 

The silver lining in this is that if surgery does not happen this week, we now get to enjoy the holidays with our cast-less, sweet girl and family and friends.  The next surgery is tentatively scheduled for the first week of January.  

I just wanted to say thank you for all of the messages and prayers.  Every one of them is so meaningful to our family and has really helped us in this journey.   From our amazing family and friend's love and support, thoughtful cards and care packages, emails from complete strangers who have gone through a similar situation, to my wonderful small group of macrodactyly moms on facebook - you have all helped me more than you'll ever know.  

Kevin and I also had some fun this week with Molly, trying to capture her feet so we will remember what they looked like forever.  Here is one of our projects.  I'm so happy with how it turned out. 

UPDATE 12/10/14:

Insurance still denied coverage after a peer-to-peer review with the surgeon.  Again, the reasoning was that there is a doctor capable in this area to perform Molly's surgery.  Her pediatrician also had a peer-to-peer review with Molly's secondary insurance and somehow got it approved!  She is a miracle worker and we are so lucky to have such a great doctor looking after Molly.  They approved to have it done between December 10 and December 24.  This was on December 9.  We now have to file an extension to push it to January.  Surgery is tentatively scheduled for January 7.  

UPDATED 12/23/14...

Kevin kept calling to make sure everything was in place and we would be good to go for January 7th.  He was told that primary insurance needs to be on board with coverage also.  We had to file an expedited appeal and are now waiting for the final verdict... 

As of 1/7/15, our primary insurance company once again denied our appeal to have Molly's surgery done in Boston. Again they said there are doctors in this area that are capable of performing the surgery and they will not cover an out of network surgery.  We wanted to get to the bottom of all of this because it seemed like we were not getting the full story from both parties.  The only reason we filed an appeal with our primary insurance company is because we were told Boston would not accept Molly's secondary insurance alone.  We were being told differing opinions from Molly's secondary insurance company and BCH.  Her secondary insurance says the procedure is approved and will be covered, whereas Boston is saying they can not run her secondary insurance as a primary insurance.  Again, we are at a standstill and are not sure what our next step is...

UPDATED 3/23/15

After months of denied appeals, Kevin and I ultimately decided that the best option for getting Molly's surgery covered would be to switch our insurance.  We got a new policy that has out-of-network benefits which allows us to travel to Boston for the surgery.  It's been a very frustrating situation, but we are happy to say that the surgery is finally scheduled (and approved!) for April 8th!