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, July 20, 2018

2 weeks and counting

Callie has been on her new medicine, Adcirca (aka Tadalafil) now for almost 3 weeks. The first few days she was experiencing some negative side effects, headaches and nausea - thankfully all those side effects have stopped now. Around day 7 we started to notice some changes in her, seems to have increased energy and talking way more. For those who do not realize it, talking takes a lot of lung capacity, which Callie lacks a little - So, if this is working and increasing blood flow to her lungs then she potentially is talking with more ease. Then on the flip side, there are days when I'm not sure I notice any difference. Which can be upsetting, but the real test will be when she starts back to school, that should really tell us how much benefit she is receiving from it. We continue to remain hopefully this medicine is doing great things for her and by January she will look like a different kid inside. That has been my prayer since all this came about and I will keep praying!

We are finally settling back in after our trip to California and after having our world rocked from the news received from California. Her team did call from out there to notify me, they hope to start scheduling all her appointments for January in the next couple of weeks or so. We have to plan to be out there for around 3 weeks due to the fact, they want her seen by the single ventricle program and all the docs in that program. Then, evaluating for transplant - which hopefully will be put on the back burner, if this medicine works for her - please keep praying. She also has to have her MRI and heart cath. This all will be a lot for her and us, but will get through it.

Callie will have a follow up with her cardiologist in about 2 wks. Will update then, please keep praying for sweet girl. Thank you all for your continued prayers, just because we are home things emotionally do not get easier, especially when you look at this sweet, happy face and know there is such a battle going on inside her tiny body. 



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