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.

Monday, January 18, 2016

Post Day 5 from Fontan

Callie had a rough day yesterday, her liver took somewhat of a hit from her surgery. So, she was out of it all day yesterday because her body was sluggish at clearing all the drugs. Today is much better as far as that goes. She is awake and talking. She is still on high flow oxygen and they will start weaning that slowly.

Our biggest issue at the moment is her left leg and arm are swollen. Left leg is almost double the size of her right. They are doing an ultrasound at this very moment to determine if she has a clot and where that is.

Callie's surgery was a Fenestrated Fontan meaning is the simplest terms is that Dr. Hanley placed a small hole in the Fontan circuit so it can act as a "pop-off" so if the pressure gets too high it can allow her to still mix some of her red and blue blood if needed. The hope is he can close that soon, like before she leaves the ICU. It is a small procedure, he tied like a noose around the hole and the ends of the string are hidden in her ribcage. So, a small incision will be made and he will just grab the ends till it closes then she will be a completed Fontan. He did this to side in her recovery. There is no guarantee it will be closed now, it may need to be done in a few months which at that point would require a heart Cath to do. So, we just have to wait and see what Dr.Hanley decides.

Other than that, Callie is moving in the right direction, she just has had some difficult days but we are thankful to see progress today. Once we figure out her leg issue, I will be more at ease. Again, please continue to pray for her recovery and her lungs start to pick up on their recovery and for her leg. She is in some pain with it, so please pray we can start to get it resolved rather quickly.

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