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.

Friday, January 20, 2017

1 year post op & hello 2017

January 13th was 1 year post Fontan for Callie, a year sure does go by fast but also seem to drag by at moments. 2016 was a hard year for our family, between Callie's surgery in January and not really bouncing back from it, she seemed to face one obstacle after another last year. Then, Will lost his job - combine that with the needs of a medically complex kiddo and you feel as if you are drowning 90% of the time. Most of the time, family and friends don't get it or can't understand everything you live with on a daily basis. Only the families who have a medically complex child can truly understand. At times, you are in a constant state of worry over half the time, if not about the child, then about how your going to take care of all your financial needs because you struggle to work even 20 hrs a week because the needs of your child are so great. We might not constantly tell everything Callie deals with or our family but it doesn't mean the struggles aren't there. That just means we are doing everything humanly possibly to live a "normal" life and not dwell on things we cannot control.

It truly has taken Callie 1 full year to recover from her fenestrated Fontan, that surgery was so hard on her body. Her heart was thriving so well on the Glenn and she was already a high risk Fontan patient that the Fontan was pretty much a shock to her body. Thankfully, I pray the worst is behind us and brighter days are ahead. She seems to be adjusting better now to the Fontan and thriving. Her anemia is being treating and her energy has returned :-) At her cardiology appointment this week, she was 48 lbs so she is starting to put weight on...hooray!!! 2017 seems to be off to a good start!

Callie will have a trip to California sometime during the summer, no date has been set at this time. She needs a cath to see if they can close her fenestration, if they cannot close it then she will have to go back in another year. At this point, she is still actively depending on her fenestration so I'm not sure they will be able to close it but we will just have to wait and see.

I pray 2017 holds an abundance of blessings for our family & yours!

No comments:

Post a Comment