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.

Wednesday, January 18, 2012

"I wanna go home"

Callie did very well with her cath. She was in the cath lab from 1130am to 530pm, Callie is such a unique patient;) She always has the longest cath you can possibily dream of! LOL From the moment we arrived till she was put to sleep and then when she came out of the heart cath, all she has said is, "I wanna go home!!" Poor baby:( But, she is a lot more happier at the current moment and watching her favorite movies. She is spending overnight in the hospital and will be discharged tomorrow.

I know everyone wants to know, Is she having her Glenn?? So, that brings me to the result of her cath. As we all know, Callie is very complex so it is a challenge to explain every detail, so as always I will do my best and feel free to ask any questions;)

Let me start with, Callie is probably NOT going to have her Glenn at this moment.Her pressure that they go off of to determine whether or not she can have the Glenn is borderline to high. The perfect number is 2.0 and Callie's is 2.8, the main reason is because Callie's main central shunt she had placed back in August is a BIG shunt for her and her lungs are getting TONS of blood flow to her lungs which in returns makes her pressure high! They think if she would grow and put on some weight and more or less grown into her shunt then that pressure could possibily come down. BUT, Callie has a major thing working against her in the weight gaining department the narrowing in her aorta which is actually better and there was nothing that could be done to make it better in the cath lab, so they just left it alone is putting extra stress on her heart which it turns makes her heart work harder and therefore she burns twice as many calories and can't gain weight. Callie has been 25lbs since July!!! All this being said is from the cath doctor. We are supposed to hear the finally word from her surgeon tomorrow about surgery and the future plans for Callie.

The results aren't exactly as we hoped but the Lord's timing isn't always our timing;) Which is hard sometimes to accept. Tonight, we are just thankful she did well and that she is doing so well despite everything going on in her little body.

We hope to be out of here and back to the Ronald McDonald House as soon as we can tomorrow. I will update when we find out the final word from her surgeon.

Thank you for all the prayers and for everyone who called and text to check on Miss Priss, it means a lot and we love all of you.

1 comment:

  1. good morning - i was getting worried when I didn't here from you. I am glad the heart cath went o.k. that was a long cath !!! give Callie a big hug & kiss from us -we love you guys- maybe you will get some good news later today from the drs. let us know - be strong & patient :)