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.

Saturday, February 20, 2016

Let's be real for a moment....

Callie has been sick with her cyclic vomiting, it was triggered by a cold she caught. We were in the ER for about 7hrs Tuesday night, getting her some IV fluids. Today she is doing better, the vomiting has stopped but she is still nauseous and exhausted from the days of vomiting and not being able to sleep.

We are so thankful that Callie has conquered CHD like a true fighter over the years. But, I can't help but be angry over how unfair life is as I watch her experience all of this. As much as I do not blame anyone, it sucks to watch people enjoying the beautiful day and my baby does not feel well enough to get out of bed. Fair? I THINK NOT!  Not only her but all the other children who are battling illnesses.  She misses out on so much not only due to having numerous heart surgeries over the years but from her vomiting syndrome. Vomiting up to 20 times an hour is absolutely heart wrenching to watch your child go through. People say they feel for her but you cannot fully understand what she goes through unless you live with her and walk by her side through every hospital stay. Yes, she bounces back like a trooper. But, she fights like hell to get there!!

She has missed over a month of school and wants so badly to go back. I am out of work caring for her until she is well enough to resume the normal routine.  She has a follow up appointment with cardiology this week. We hope she will be back to school by March, please pray she is able to catch up and jump right back into school without struggling to hard with the work.

This is not directed towards anyone just more to vent, sometimes you just have to put it all out there. We are thankful for all the wonderful people who have reached out to brighten Callie's day and help our family over the years. Please continue to pray for her recovery. She has lost a lot of weight and we have lots of work to do to get her back to where she was before. Pray for positive results at her upcoming cardiology appointment.

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