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, September 25, 2011

Thought I would do a follow up from my last post, so everyone could be brought up to speed with what is the latest with Miss Callie.

All of Callie's GI test were normal, she saw the GI doctor a week ago and at that appointment that diagnosed Callie with Cyclic Vomiting Syndrome. If you don't know what this syndrome is, take a minute and look it up. Let me just say, it is HORRIBLE. Basically, it comes in cycles and you have know idea how long a cycle will last. Her last cycle was 10days, 10days of nausea, vomiting and feeling horrinle 24/7, it is miserable to see your child like this and your helpless. It puts your life on hold because doing anything is impossible. Callie gets Ativan as needed to help and they started her on Cyproheptadine to hopefully give her longer breaks in between her cycles. As of right now, she has only had a total of about 8days this month where she hasn't been sick=( This vomitng syndrome has triggers, such as stress, excitement and whatever else. Obviously, Callie's is stress! Everyone's thinking is all the physical stress her body encountered this last hospilization brought this out in her. Thursday Callie has an appointment with Neurology, I am hopeful they will be able to start her on an additional medication to help with this cycles.

We attended the Heart Walk on Saturday for the first time since Callie was born. Every year we have been in California, so this year I was very happy we were home for it =)

Thanks for checking in!

Will update after her appointment on Thursday.

1 comment:

  1. SO SORRY to hear about Callie's cyclic vomiting. That is no fun at all. I know what you mean about watching your baby girl be miserable. Reagan used to be like that but thankfully has seemed to "outgrow" it. I will pray the same for Callie.
    Glad you guys got to attend the Heart Walk. Thanks again for the update!

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