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, January 26, 2014

Amazing


Think this picture says it all!

Callie is doing awesome to be just 3 days post op. The doctors are so pleased with her recovery especially since she got a late start off the ventilator compared to most glenn patients. She spent a whole extra day on the ventilator rather than getting off in a matter of hours like most patients. Callie's Glenn procedure was a very unique procedure it was not performed the conventional way and we are so thankful for surgeon who was able to successfully perform this surgery despite Callie's complex little heart. Dr. Hanley will never know how thankful we are for him and what a special place he holds in our hearts. 

Callie had some lines removed today and is back on all her medication from home, she has started back on her night feeds and she is only wearing oxygen here and there in hopes to help her heal faster. The oxygen isn't a requirement but the doctors believe that in glenn patients it help their recovery if they wear it as their healing. So, we try our best to keep it on her even though she hate it :-/ Callie still has her chest tubes and we are praying that they will stop draining so she can get those out ASAP. Her blood pressure is high right now so we are working to get that under control. So, the 2 main prayer requests are for her blood pressure issue to resolve and the chest tube drainage to dramatically slow down. At this point those are really the only things keeping her from being discharge.

I amazed when I look at her and just how resilient she is, the child seems to rock surgeries like a champ! She has more strength and determination than really anybody I know. I am thankful the Lord has allowed me to be a Mommy to such a special little girl. Again, thank you for the continued prayers, for all the financial contributions it has helped us out in ways that you can only imagine. 

Also, we finally got a room in the Ronald McDonald House as of yesterday. Praise the Lord! It feel like we would never get in...this is a huge blessing. 

I know I haven't been on top of my updates but I am trying. Callie has been very demanding this go around and she is wearing me out ;-) 

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