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.

Friday, April 1, 2011

Visit with Dr. Hanley

Our meeting with Dr. Hanley went well, he is such a kind man. So, he thought Callie's cath looked pretty good. The pressures were lower but not low enough to start thinking about her Glenn. He wants to get rid of Callie's 2 central shunts she has and place one big shunt, that way she will get more blood flow and that's one step closer to the Glenn. He said, placing the bigger shunt will allow her more time for her pressures to hopefully come down even more. And then hopefully at that time she will be a better candidate for the Glenn.

So as far as surgery, she does not need surgery at this moment. But, we will be back in July or August for her to have another open heart surgery and have that one big shunt placed. All in all, she is moving in the right direction and that's all that matters:)

Dr. Hanley did say, that her oxygen saturations need to be 75 or greater. If she dips lower before we are scheduled to come back then we need to go ahead and make the trip back to California. Right now, she is pretty steady in the low 80s so we are pretty sure she will make it to the 1st week of August. That is when we are aiming for since Will will have more vacation then.

Callie and I are flying out tomorrow at 11am. We can't wait to get home =) Thank you for all the prayers and support during the trip. Callie is proof of the power of prayer! Without all the support, I'm not sure how we would do it because it's definitely not easy at times. But, we will do whatever we haveto for our baby!

Sleepy Girl

Callie was discharged at around 11am, we went back to the room and she climbed right in the bed and slept while I took a shower. She was so tired and relieved to be out of that hospital. I had to wake her up so I could go get something to eat...the last time I ate was like 2pm yesterday! I was starving!!!!!!!!! Poor baby, slept the whole entire time I ate and then came back to RMH and slept another 4hrs. She was able to do some arts and crafts tonight which she really enjoyed=) Please pray for her, she is having a hard time understanding why her Daddy isn't here! She doesn't realize he can't just jump in the car and come and see her=( Breaks my heart!

I have a meeting tomorrow at 930am with Dr. Hanley to discuss the results of the cath. I am very anxious to see what he has to say.

Thanks for all the prayers, we are so grateful for all the support.