Learn About Callie's Journey with CHD

My photo
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.

Thursday, January 17, 2013


Callie has been spiking fevers for the past 24 hrs. She was discharged earlier yesterday morning and then by 230pm she had spiked a fever. They had her return to the hospital that same evening to be admitted. We got there around 630pm, they took some blood to check her white blood cell count and to send cultures. Her white blood cell count came back fine so they allowed her to go back to hotel and as of this afternoon her cultures still have not grown anything. With that being said, we were back at the hospital this morning because she ran a fever all night:( They saw her in clinic to just recheck her. Her right ear was apparently very red. So, the thought is that might be why she has been spiking a fever. She issued Callie antibiotics and sent her on her way. To back track, Callie can only take Tylenol because she is on  a blood thinner and she doesn't respond to it. So, that was another reason I was having such a hard time getting rid of her fever. We have backed off on her blood thinner some so we can give her Motrin instead of Tylenol. She had Motrin earlier today and after about an hour her fever was gone. But, just in the past hour she has spiked another one.

On top of everything, Callie's cyclic vomiting syndrome has started back full force. Needless to say, she is vomiting A LOT:(

Thank you to everyone who is praying for Callie and for everyone who has called or texted to check in on her . I apologize if I haven't responded to everyone. I am exhausted and running on very little sleep. So ready to be home. We hope to make it home Friday sometime.


  1. hope her fever goes away and stays away and the vomiting stops

  2. I would just like to say, your blog brought tears to my eyes.
    I am almost 50 now, my sister if she had lived would have been 44. She died in 1969 of tracheal atresia in a children's hospital in St. Louis.
    I strangely remember a lot of what my parents went through even though I was 5 and 6 at the time. My mother has never really gotten over the loss of my sister Lori. I am not sure any of us ever did.
    I am happy to finally see a child surviving this at last. It amazes me that we haven't come further medically since 1969, but from what I have read it is a challenging issue. I am buying a bracelet when I finish this note.
    God bless you and you are in my prayers.