Learn About Callie's Journey with CHD

My photo
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.

Friday, January 20, 2012

Surgery OR No Surgery????

We recieved our answer about surgery a few hours ago. Dr. Hanley said, No surgery right now!! He was happy with most of Callie's results from her cath but wants her pressures to be a little lower. So, he is hoping by giving her a little time that it will come down from 2.8 and get closer to 2.0.

So, when is our next trip out here, you might ask!??! Probably in 6mths or sooner. This is yet another answer we are waiting on, he is supposed to call us on Monday to discuss with us Callie's results from the cath and tell us when he wants her back.

I think at this point we are a little thrown off, overwhelmed but happy she doesn't haveto go through another surgery at this time. Nobody wants to see their child go through what we have had to watch our child go through and you can't possibily understand until you have experienced it. With that said, we were hoping for Callie to get this surgery done and over with! So, she and us as a family could experience a stretch of normal life lasting more than 6mths and give her a chance to just enjoy being a child and not have to put her through this stress every so many months. Uprooting our lives every so many months has been hard, never knowing what to expect when we get out here.....we fear for Callie's life and whats ahead for her, we struggle to keep things going back at home while being in CA but this is our lives! And as hard as it can be at times and all the ups and downs we are handed, I would not change it for anything because we have the most precious, silly, hard headed, beautiful little girl and she is worth every bit of it. We love you Callie Ann and we will continue to do whatver it takes to get your little heart mended for good and one day all you go through will be a distance memory but a huge part of you at the same time. We can't wait to see the awesome things God has in store for your future!

"I will go before you and make the crooked places straight"
Isaiah 45:2)

Sorry for rambling but thanks for stopping by and checking on Callie:) Just needed to vent a bit;) I will continue to update as we figure out what is next. We hope to be home sometime next week, we are in the process of getting plane tickets figured out.

No comments:

Post a Comment