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, February 11, 2010

Settling In....

Sorry, for not updating sooner. But, we have been trying to settle back into being at home and getting Callie back into her normal routine. Callie was having major seperation anxiety and wouldn't even sleep unless I was in her room. The past couple days she has been doing a lot better and I finally believe she is feeling much more relax. ( and not like someone is going to hurt her every 2 seconds, like in the hospital)

This last trip was extremly stressful and I am very thankful to be back home. Lots of different things were discussed in this trip. The first cath she had when we arrived, was not good as explained previously. They told us, to talk to the transplant team ( for a heart and lung transplant) because there was nothing more surgically her surgeon good do to fix her and they were almost positive Callie would not reach her next stage of surgery, the bi-directional glenn. The only thing they offered was that, they would do a heart cath as often as needed to sustain her, until heart caths couldn't help her anymore then look into transplant.

Then, she had the next cath and things looked more promising. I then spoke with her surgeon, who said, Callie is a special little girl with a very complex situation and continues to keep trucking along. He also stated, she is out growing her shunt on the right side and that will need to be replaced soon and at the same time he also wants to address the issue with the aorta,it is laying on the lower pulmonary vein and also try to surgical fix the upper pulmonary vein that keeps narrowing on her. This would be open heart surgery and she would have to go on bypass which they have never did with Callie before. This surgery would be another step, in hopes to get her where she needs to be to have her Glenn. Depending on how fast Callie grows and her weight gain will determine when this next surgery will be. Thoughts are it will be sometime in the next 6-8mths.

Callie does not have a schedule appointment to go back to California. Basically, when her breathing starts to get harder, that's when we head back out. Since you cannot see what is narrowing very well on echos , it's hard for the cardiologist to instruct us when to go. Just like we were not supposed to go in January but because her breathing was heavier we did and it is a VERY good thing we went when we did. So, we have no idea exactly when our next trip will be.

This trip was a rollercoaster of emotions. It never gets easy watching your child go through hell, if anything I believe it gets harder as they get older because they understand more. There's not a day that goes by, that I do not fear what the future holds for Callie. But, I try to face each day like Callie. Fearless. Because dwelling on what may be, does not get me anywhere. I've learned to take what the doctors say, with a grain of salt because things change in the blink of an eye. And they do not know the future only God does. It hard to understand God's plan for Callie at times, but I know it is an awesome one:)

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