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.

Sunday, August 21, 2011

I was able to get Callie sitting up in a chair today, she did this once the other day but not since. So, it was good for her to get out of the bed. In the next day or two, I am going to get her in a wagon and take her for some sunshine;)

Last night, she spiked a fever but never spiked another one. As a precaution they started her on an antibiotic. She went for her swallow study and she does aspirate, so now she can only have thickened liquids. But, they want us to repeat the study in 4-6wks, everyone believes it is only temporary. Fingers crossed!

Blood pressure continues to be an issue but is more under control today and they are going to up her next dose of bp med. So, I think in the next day or so it should be under control.

Now, another mystery.............Why is Callie requiring so much oxygen? Her xray continues to improve, but her requirement for oxygen is still the same. Please pray this resolves itself and we don't have to think anymore about it.

Your prayers are still needed, she still has the couple of hurdles to get over. This trip has been so mentally draining, I can't even begin to find the words to describe it.


  1. Sarah, so many people are praying for you guys! My assistant principal at school asks me about her all the time and reads your blog when I post it. Love you! Lynne

  2. Carson misses his neighbor from the CVICU! Hope Callie gets well soon. We will keep in touch. It was nice meeting your family.

    - Brad, carla, carson, and lucy

  3. I mean lucy misses her neighbor Callie :)

    - Already mixing up the two kids.