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.

Thursday, October 14, 2010

Results of cath

First of all, sorry for the lack of posts but things have been hectic lately and it's hard to sit down and type when I'm by myself in California with Miss Priss!

So, Callie did GREAT with her cath, she was able to go to the general floor instead of the ICU after her procedure. It's been forever since we've went to the floor, she always required ICU the past few times. Thankful she did so well this time:)

Her cath results overall were good, she is stable and does not require a surgery right now. But, the left upper pulmonary vein that Dr. Hanley worked on in April was almost completely closed off again (NOT GOOD)!!! And the left lower vein is still being compressed, that isn't going to change until something surgical is done to fix it. A stent was placed in her upper pulmonary vein to see if that will work to keep the stubborn thing OPEN. Fingers crossed that it works. That vein has to remain open in order for her to be a candidate for her Glenn surgery that she so desperately needs.

Callie has been saying home, Daddy and Nana the whole time she was in the hospital, she misses everyone so much and I know she cannot wait to be back :)

We fly home tomorrow and will return to California again in 6mths for another cath to once again evaulate the situation.

These trips are only getting harder as she gets older in one way, but in the other she is becoming more and more used to the hospital, nurses, etc. And as a result she is an ANGEL when she is there and helps the nurses when it's time to take vitals and says Hi to everyone she sees:) She is something extraordinary and Will and I are so blessed to have her as a daughter.

Sunday, October 3, 2010

Trip #????

Well, we are off to California once again a week from tomorrow!!!! So, this is trip number.....well,not really sure, I'm starting to lose count we go so much!!! Callie has pre-op on Tuesday the 12th and heart cath on Wednesday. Please keep her in your prayers that all goes well and she only needs to spend ONE night in the hospital.

Praying hard for good news, Callie has been doing really well and looks great. Praying the same is true on the inside!

Please, also pray for Callie having to be away from her Daddy, it gets harder as she gets older, going without seeing him for days at time! She misses him a lot when we are there and it breaks my heart to see her cry for him! Pray that a room will be available at Ronald McDonald House and for safe trip.

Thank you for all the prayers and support, we are grateful for everyone who is praying for our little girl and the family.