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.

Tuesday, November 15, 2016

Exhausted & Looking Ahead

I have not updated in while, mainly because things have been very hectic and stressful for our family. Callie started 3rd grade in August and continues to love school. She has some amazing teachers and we could not ask for a better school for her. August was a pretty good month for her, with the exception of some fatigue. However, September hit with a vengeance, she had a vomiting cycle hit that lasted for a week. She just couldn't seem to recover, the fatigue she was having was just crazy. Then, October came and once again, she had another vomiting cycle. Around the same time she had a couple of appointments, one with her specialist for the vomiting and the other with her Pediatrician. Both agreed, her hours needed to be cut at school, her weight was down and the fatigue continued to get worse.

Which brings us to November, now she has her check up at the Cardiologist. Her heart rate is elevated but echo, ekg all look unchanged. So, due to her extreme fatigue, elevated heart rate and the lack of weight gain, her cardiologist order some blood work. A few days later, her pediatrician ordered additional labs and some xrays to cover everything, in hopes we get an answer to what is happening with her. Well, our answer is she is severely anemic! Which we think was set off by her GI bleed back in July and because we were unaware of it, her fatigue has just been getting worse. Let me just say, I am thankful for 2 wonderful doctors who take such wonderful care of my baby. They will never know how much I appreciate them and all they do. Will and I have been extremely worried about her, words cannot describe how thankful I am that it is something that can be corrected.

Callie will have some repeated blood work in a few weeks and along with some new blood work, just to make sure they are not missing anything. Our hope is over the next few weeks, she will regain her energy, her heart rate will return to normal and she will start to gain her weight back. Seeing your child so tired, that everyday is physically a struggle is absolutely heart breaking and I am ready for my spunky girl back. Sweet girl is also getting over the flu :-(

Please pray for Callie and everything will resolve itself soon. We will continue to cut back her hours at school until she proves she feels well enough to go back to full days. Which means I will continue to cut my hours at work, I have missed a tremendous amount of work over the last few months due to the need to be home with her. This has created a bit of a financial strain on us and we have yet to really bounce back since her trip to California in January. Callie will always be #1 and as long as she is healthy, well then the bills and everything else will just have to wait.