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.

Thursday, August 18, 2011

Callie had a good day today, she slept well last night. I'm not sure how she gets any sleep in the ICU, it can be so loud at times! This morning I fixed her hair, put a pretty new bow...she wasn't thrilled with me brushing her hair but was happy to have me put the bow in:)She did some coloring today and watched lots of movies.

They are playing around with her blood pressure medicine, she will be going home on bp meds until she returns for her next cath. They started up her feeds again today and she was able to eat a little cereal and ice chips. She will possibly be going in for a barium swallow to rule out if she aspirates when she swallows. Everyone believes she will be fine because she has a good strong cough and her vocal cord should return back to normal working in order in a matter of time. ENT believes it is only temporary:) YAY! Her one chest tube is still putting out a fair amount, I'm praying it slacks off and she can get that out very soon. She is still on high flow oxygen, they are working on weaning that down.

Will leaves to go home on Friday, so that sucks:( I'm hoping Callie does okay with him leaving, hopefully she won't mind too much.

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