Tuesday, November 27, 2012

Surgery at BOSTON is a GO!

It's official, Lilliana is scheduled for surgery Feb 11th at Boston Childrens Hospital! It will be a whirlwind... we will have to be there by the evening of Feb 6th as on Thursday the 7th she will be having a tour, meeting the team (of surgeons and cardiologists), getting blood work done, an echo, an EKG, etc. Friday the 8th she will have a heart cath (to coil her collateral veins) and an MRI. We will then have the weekend to recover and surgery will be Monday the 11th. More than likely we will be in Boston a minimum of 15 days! Yikes.

A few set backs... we found out our supplemental insurance will not cover anything out of state (thus we will have up to $6000 out of pocket medical expenses).

We are now working of transportation. There is an AMAZING organization called Wings of Mercy that MAY be able to fly us out there. The only catch is we need to know from her doctors what altitude she can withstand. It will be a longer and much more expensive flight if she cant go above a lower altitude and thus that may not be able to take her case. If they are not we would have to either drive or take a train... neither of which sound like a great option (but we'll do what we have to).

Accommodations are actually seeming to come together quite smoothly if we can get into Boston Children's "shared family housing" at $30 a night.

This is like planning the most complicated vacation.... but unfortunately when we get there it wont be fun and games it will be open heart surgery for sweet Lilliana :( 

I know so strongly within my heart this is were we need to go and I will do WHATEVER it takes to make it happen.

We have a few friends who are going to plan some sort of fundraiser to help with all of these {extra} costs.

Thank you so much for all of your love and prayers, they are the MOST VALUABLE thing we could ever ask for. They have gotten Lilliana (and me) through the unthinkable before and I know they can do it again!