Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Saturday, January 11, 2014

Overwhelmed & Confused

Due to Callie's echo this past Monday, that revealed her shunt no longer looks as open as it should be and providing sufficient blood flow to her lungs...California was called and the decision to have her out there ASAP was decided by her doctors there. We fly out Tuesday or Wednesday with her cath on Thursday, Jan. 16 and scheduled for surgery the following Wednesday.

I am confused at her situation because recently she has been very blue and oxygen in the 60s and now today she is back in the 70s. I just want to scream!!! She is still very blue and her appetite has went downhill in addition she gets tired very quickly. Even though she is schedule for surgery, there is always a chance she will not have surgery depending on what her heart cath shows....we just never really know. Which makes it that much worse. They are assuming at this point she has outgrown her shunt and they would proceed with her Bi-directional Glenn if this is the case. I am just very confused and worried at this point....I am not really sure what to think about what is going on with her. But, in order to get a better idea she needs to be seen in California.

We are thankful for the time at home and pray whatever will come about will be in God's timing and Callie will do wonderfully. Due to the way this trip came about, we have not had any time to plan for a fundraiser or anything like we usually do to help with the expenses of out trip. Every trip is very costly on top of maintaining our normal bills. The below website has been started to help offset the expenses we will encounter.

http://www.youcaring.com/medical-fundraiser/caring-for-callie/125048

We appreciated all the prayers and financial contributions that so many people have sent our way. Without the support of others, these trips would be almost impossible for our family.

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