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.

Monday, August 15, 2011

Moving Along...

Callie had a little set back, so she was extubated on Friday but then on Saturday morning had to go on CPAP because her right upper lobe of her lung had collapased some:( Today she was able to go back on high flow oxygen for part of the day and then tonight was put back on CPAP just for overnight. Then, in the morning if her xray looks better she will get rid of the CPAP all together and go back to high flow.

She was able to get 1 of her chest tubes out! YAY! We are slowly making the transition from IV meds to oral meds. Her gtube feeds were started back today and hopefully she will continue to do well with that. Making progress, so thankful!

There is still question of what is going on with her blood pressure. She has been on 2 IV blood pressure meds since Sunday to control it. Anytime the docs would try to go down on them her systolic (the top number) would eventually make its way to 150 or higher! So,last night they were able to get her off of 1 but had to go to the ma dosage on the other and add a oral bp med. They don't really know what is causing her bp to be so high. Tomorrow she will have an ultrasound to check her kidneys to make sure there is no clots, apparently if you have a clot that can cause high bp. But, they don't think she does because she is peeing well and her blood work looks fine. Guess we just haveto wait and see. Please pray it is nothing and a simple solution or just resolves its self.

Callie will also have her left vocal cord looked at tomorrow by ENT to see what the status is with that. Having been down this road before, I think her vocal cord is fine or could be just temporary because her voice is quiet but not too bad. I think it will be fine.

Callie has been sleeping a lot today, she has been coughing a lot due to her lung situation and the medication they are giving her for her breathing treatment. So, all that coughing wears her slap out. She also is very quiet, doesn't say hardly anything. She looks at you like, what the heck!?! I feel so bad, I just want to scoop her up and get her outta here. But, hopefully not too much longer. She is doing awesome and everything is heading in the right direction:) Thank you, Lord.

Please continue to pray for healing of her little body and for her stay not to be much longer in the hospital. Recovery is so much better in the comfort of home:)

Thank you everyone for your continue prayers and support. We are so very grateful, this has been a tough trip and having all the support makes it a bit easier.

1 comment:

  1. sarah and will i love you both i can't even read an update or inform anyone that asks about callie without balling. i really don't know how you both seem to be holding it together so well and i brag on you both. you are very strong and callie needs
    your strength and with gods grace callie will be up and smiling soon ;) we pray for u all

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