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.

Saturday, February 20, 2016

Let's be real for a moment....

Callie has been sick with her cyclic vomiting, it was triggered by a cold she caught. We were in the ER for about 7hrs Tuesday night, getting her some IV fluids. Today she is doing better, the vomiting has stopped but she is still nauseous and exhausted from the days of vomiting and not being able to sleep.

We are so thankful that Callie has conquered CHD like a true fighter over the years. But, I can't help but be angry over how unfair life is as I watch her experience all of this. As much as I do not blame anyone, it sucks to watch people enjoying the beautiful day and my baby does not feel well enough to get out of bed. Fair? I THINK NOT!  Not only her but all the other children who are battling illnesses.  She misses out on so much not only due to having numerous heart surgeries over the years but from her vomiting syndrome. Vomiting up to 20 times an hour is absolutely heart wrenching to watch your child go through. People say they feel for her but you cannot fully understand what she goes through unless you live with her and walk by her side through every hospital stay. Yes, she bounces back like a trooper. But, she fights like hell to get there!!

She has missed over a month of school and wants so badly to go back. I am out of work caring for her until she is well enough to resume the normal routine.  She has a follow up appointment with cardiology this week. We hope she will be back to school by March, please pray she is able to catch up and jump right back into school without struggling to hard with the work.

This is not directed towards anyone just more to vent, sometimes you just have to put it all out there. We are thankful for all the wonderful people who have reached out to brighten Callie's day and help our family over the years. Please continue to pray for her recovery. She has lost a lot of weight and we have lots of work to do to get her back to where she was before. Pray for positive results at her upcoming cardiology appointment.

Friday, February 12, 2016

10 Days Home

We have been home now for 10 days :-) Callie is doing well but has been very tired. The thinking is that it is still just her body trying to recover from such a big surgery. Due to Callie's complex anatomy,  the Fontan is a little harder for her body to adjust to and may take some time.

Last week, she followed up with her cardiologist and was sent home with a 24 hour holter monitor due to some PACs and PVCs that were occurring in the hospital and have continued to occur.

***Premature atrial contractions (PACs), also known as atrial premature complexes (APC) or atrial premature beats (APB), are a common cardiac dysrhythmia characterized by premature heartbeats originating in theatria. While the sinoatrial node typically regulates the heartbeat during normal sinus rhythm, PACs occur when another region of the atria depolarizes before the sinoatrial node and thus triggers a premature heartbeat.

**(PVCs) are heartbeats that occur earlier than they should. These early beats briefly interrupt the heart's rhythm.

The good news is she is having more PACs then PVCs. But, it also has to be watched closely. So, this coming Wednesday when she sees cardiology she will have to wear another 24 hr. Holter monitor and hopefully the results will show it is happening less frequently.  Callie never had this problem before the Fontan so this is something new since her surgery.

She still has not been cleared to return to school. We are hopeful after her appointment next week she will get the all clear. Please continue to pray for her overall healing and her energy level will start to pick up. At this moment, there is no way she could make it through a whole day of school. Please also pray for her PVCs & PACs that are happening and pray for them to STOP. I would be lying if I said, I wasn't worried about them.

Monday, February 1, 2016

Home It Is

Callie's chest x-ray went just fine, the doctor said, everything looks good :-) So, we will be flying home tomorrow at some point, still trying to iron out all the details. We are about $400 short for Daddy's ticket, please pray we can get that squared away.

Callie has been doing better the past few days. Her tummy pains continue to improve, thankfully. She is pretty worn out and has been taking long naps, as to be expected. We are very thankful Callie is doing well and we are able to return to the comfort of our home!