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.

Tuesday, November 6, 2018

Planning, Planning and More Planning....

Scheduling for Callie's next trip to California is in full force. We will be leaving in early January, for a full 2 weeks of appointments. Pretty much everyday she is being seen in the hospital for an appointment, not to mention the overnight stay she will have after her heart cath. She will be having a repeat heart cath, repeat MRI, plus numerous other tests that I will explain as it gets closer. She will be seen in the single ventricle program, which is a positive thing, it basically evaluates her overall to get a baseline and hopefully ward off future issues. There will be some talk with transplant also, but mainly for us to learn more. Everyone's hope is transplant can be put off for many years. But, we will know more after her cath and MRI. If I said, we were looking forward to this trip - I would be LYING - none of us truly want to go. For many reasons we were just there but also fear of the unknown. This is a big appointment for Callie and we are praying for BIG things, because God is in control and not what some specialist says about my child. There is so much more to her than what they read on paper, she is constantly analyzed from head to toe. While it is a necessary evil to ensure she has the best care, you always wish it wasn't needed. 

Callie has been doing well on her half tablet of Tadalafil (pulmonary hypertension med). We did have one instance where they tried to go up on her dosage and it triggered a vomiting episode, so we went back down to the half tablet and that is where we will be staying. She seems to be having good results from the medication, more energy and increased oxygen saturations. Also, enjoying GYMNASTICS!!! We are hopeful that these are good indications that things are improving for her and January will be much better results than June. We did choose not to start her on the 2nd medication as previously discussed, only because we would like to see what her results are in January. The medication has many side effects and its just one of those decision as parents you have to make sometimes, and pray like hell it was the right one!

She recently had a CT scan of her lungs and a barium swallow. The CT scan was to check for chronic lung damage and that test seems to have come back normal. Her barium swallow was to check for aspiration and that was also normal. We are so thankful for these results and continue pray that her tests to come in the coming months , yield wonderful results as well. Tomorrow she has a cardiology visit, praying for a great check up! Thanks for checking in and I will continue to update. 

**We are working on a t-shirt fundraiser for our upcoming trip - so keep an eye out for the shirts. They will be super AWESOME!!! 

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