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.

Sunday, January 29, 2012

1 year....

We arrived home this past Tuesday and finally heard from Callie's surgeon, Dr. Hanley on Wednesday afternoon. Are you ready for this?? Callie doesn't haveto go back for 1 YEAR!!!!! We were shocked to hear those words, since 3mths. of age she has been traveling to California every 4-6mths.

Dr. Hanley said, he was happy with Callie's numbers and if she didn't have such a complex heart defect then he would proceed with Glenn. But, given Callie's situation he believes it is best to leave her and allow her more time to grow and then next January check her pressures again. Since Callie doesn't really grow that fast, he believes coming back in 6mths would be a waste of trip. Callie is stable and doing great with the shunt he put in back in August, this past cath did show the upper left pulmonary vein was pretty much closed off again even though he surgically fixed it last time. Unfortunately, it is pretty much a given that it is going to be fully closed off our next trip which Dr. Hanley said, isn't the ideal situation but he can work with it;) (he is so awesome!!) So, the only reason we would haveto return to CA sooner than a year would be if Callie's oxygen starts to drop and her stats stay low for long periods of time, Dr. Hanley said. This would probably mean she is out growing her shunt. Which there is a strong possibilty this could happen but only time will tell. If she does out grow it before a year the she would have her Glenn at that point.

We are so exicited just be home and know there are no trips planned back for a while. It is an awesome feeling:) You never know what is around the corner....nobody could have predicted Callie would have had 3 heart surgeries last August all in a matter of days of each other, just like it couldn't have been predicted that she wouldn't have surgery this trip and that her numbers look so good and that her aorta situation is a million times better now. Sometimes it can be rough all the ups and down we go through on this journey, but no matter good or bad....we just have to hang on and roll with what life throws at us;)

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