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, December 21, 2013

Sickness:-(

Today is the 1st "good" day Callie has had since Dec. 9th...she came down with that cold and it just consumed her !!! The cold triggered her vomiting syndrome, so not only has she had a horrible cough, she had to deal with vomiting every 2 seconds. Finally today she hasn't coughed her head off and only vomited once. Praise the Lord, it has been rough the past couple of weeks. She has been to school since Dec. 6th and now she is on Christmas Break so hopefully we can start the New Year off fresh and sickness free.

Callie is excited for Christmas but does not like Santa, she will not have anything to do with him. Poor kid is terrified!!!! One day I will get a pic of her and Santa together but not this year ;-)

On other news Callie has been looking very blue here lately, her lips stay pretty blue...please pray her oxygen hasn't dropped too much and we still have some time before traveling back to California.

Merry Christmas :-)

Tuesday, December 10, 2013

Sweet Girl

It has been a while since my last update but as always that is usually good news! As you can see Callie was a cowgirl for Halloween, she is in love with horses right now :-)

She is doing well in school and we stay very busy........I spoke with California about a month ago and we are on the waiting game at this point. They for sure want he oxygen in the 60s before she returns, so they will know for sure she will need a heart surgery they see her next. So, we just wait and I am supposed to call when she is consistently in the 60s. I know most of you are probably like, "Wow, that is scary!" But, not really...she will most certainly be blue but she has been that low in the past..it is just the nature of having a heart kiddo.


So, her next trip with out doubt will be her 9th open heart surgery. I have not checked her oxygen recently and will be doing that soon because her hands and lips are staying fairly blue here lately. My guess she will end up going to CA in Feb/March. We are thankful for the break from surgery and that she continues to beat the odds and thrive despite everything. This past Sept. was 2 yrs since her last 3 open heart surgeries and words cannot describe how grateful we are!

Callie is right now fighting a cold so please pray she will get over it quickly, she has a pretty nasty cough.

I will leave with a few pics and will update soon.......