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, January 17, 2014

Cath Results

Sorry for taking so long to post, things have been very busy here and we have barely had to to sleep. I think the most we have slept at one time is 4hrs. As most of you know, Callie has been struggling with her Cyclic Vomiting due to the stress of having to come here and be in the hospital. It has been really bad and if any doctor, xray tech, echo tech, anybody other than the nurse walk in the room she will start vomiting. However, it is much better this morning and we are praying she won't really throw up anymore and she will get discharged today:-)

So as for the cath results, we were blown away with the amazing news we received. Callie was in the cath lab about 4hrs. give or take. She came doing very well! Her cath showed the her pressures are the BEST they have ever been, these are numbers they look at in order to do her Glenn. Her pulmonary vein that she has stenosis in was still open which almost a miracle. The shunt is starting to become to small very her and the blood flow she was getting before is not the same. The only issue was her aorta, as many of you remember Callie has 2 emergent open hearts after her main surgery in Aug 2011, well that was because her aorta ruptured so her aorta now has a narrowing it. So the narrowing had worsened since her last cath a year ago. So, they placed a stent and it should last a couple of years. Here is the news- Callie is getting her GLENN !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We are beyond thrilled, its been a crazy and rough road but we are starting to see the light. Without Dr. Hanley none of this would have even been been possible, he has saved our daughter's life and we will never be able to say, thank you enough!!!!!!!!!!!!!! And it goes without saying, we serve a mighty God and at times we have questioned his plan for her but know is wisdom is greater than ours and have never given up on believing. Even in the midst of the roughest time, I still could feel sense of assurance from him that she will pull through. That is faith, you have to believe and trust without a doubt and lay it all at his feet. It is definitely a challenge because we as humans like to be in control ! LOL

Now that is good, here is thing we still have to think about. Callie is very complex so this surgery is riskier for her than most. Dr. Hanley will do it off bypass but there is a chance she would have to go on it during surgery if there were issues. Please pray this surgery will go perfectly and he can manage to keep her off of bypass. So surgery is for Wednesday and will be a 6-8 hour surgery.

Will and I are so grateful for the outpouring of support, the prayers are working in miraculous ways! 

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