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 19, 2014

Feeling Better

Callie was discharged early yesterday morning from the CVICU. YAY!!! She was still vomiting some but not as near as bad, her cycle was starting to come to an end. She slept basically the rest of the day and by the evening starting to look much better.

We did have a room at the Ronald McDonald but it was in the Immune Wing of RMH and only for transplant, chemo patients and Callie cannot stay there. So back in a hotel we are and waiting for another room to become available :-/

Today we took Callie to Monterey Bay Aquarium, she loves it there and deserves it!!

It wore her out and by the time we got a late lunch, she was ready to crash, so we headed back to the Hotel. We cannot let her get run down or we risk her vomiting syndrome starting again! It is like walking on eggshells sometimes.

We are not talking about her surgery in front of her because we do not want her worrying or getting stressed out before Wednesday. She is schedule to go in around 7am CA time and we hope her to be done by 3pm if all goes well. Please continue to pray for her safety during this procedure and all goes well without any complications. While this is one of the simpler operations it can potentially be very risky for Callie because of her complex defect and it still worries me.

Thank you again for all the financial and spiritual support. We are so thankful for everyone who is praying for our sweet girl. Financially it is tough, especially with staying in a Hotel going on a week now(on top of our food, car, etc) and trying to keep up with bills at home. Sometimes we feel like we are drowning, so thank you so much for all your support we are forever grateful!

We are just going to enjoy the next couple of days relaxing and spending time as a family before surgery day!

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