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.

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!

Saturday, January 30, 2016

1 Day at a Time

We have just been relaxing at the Ronald McDonald House since Wednesday. The 1st couple of nights were a little rough, Callie was battling a lot of nausea. I think towards the end of her admission she was starting to get very stressed out due to all the people messing with her. This all plays on her vomiting syndrome and makes it a battle for her. 

Yesterday evening and today have been better but she still complains of not feeling well. She is having a nap right now, hopefully she will wake up feeling much better. We know it will take some time to build back up to her normal self but you wish it would happen much faster....there is nothing easy about about this life. But, all you can do is take it 1 day at a time! 

Wednesday, January 27, 2016

Diva Discharged

The Diva was discharged today! We are so happy to have her out of the hospital. She is very tired and has spent most of the afternoon sleeping at the Ronald McDonald House. No plans for the next few days, just have her resting up and building her strength back up.

We will have a follow up with a chest x-ray on Monday at the hospital here and if all is well, they will give us the final okay to go home.

Tuesday, January 26, 2016

Looking Forward

Callie will hopefully be discharged tomorrow....as long as she has a good day with  no hiccups and her chest xray looks okay in the morning.  Her lungs took a real beating from the hematoma that was sitting on her lung, so it is going to take a good 8 weeks they think for her lungs to fully recovery. But, now that she has her chest tubes out they want to make sure she isn't going to accumulate any fluid. Please pray for things to continue to move in the right direction so she can be discharged tomorrow.

We will not be able to go home right away, they want her to follow up in clinic here on Monday and then probably fly home Tuesday or Wednesday as long as all goes well at the appointment.

She will also have to come back in a few months to have another heart cath to have her fenestration closed. Yep, another trip!!! She will be monitored closely at home to determine the right time for her to return California.

Monday, January 25, 2016

Busy Day

The rest of Callie's chest tubes were taken out today, along with her stitches and her pacing wires. She is officially rid of everything, the only thing remaining is her central line and that will be taken out sometime this evening.

Not sure when discharge is but should be rather soon :-) She had an echo early today to get a good look at everything.

Thank you for all your prayers and support during this time. We are very thankful for all the support from each and every one of you. It makes times like these a little easier.

Sunday, January 24, 2016


Yesterday, Callie was moved from the ICU to the step down unit :-) She had a good day yesterday and we are hoping for an even better one today! She will be getting 2 of her 4 chest tubes removed this afternoon!  Hooray!!! Very happy about this.

After those 2 chest tubes are removed, we are going to get her up and walking around the unit. She has been getting out of the bed but just to go to bathroom. So, she needs to start doing some real walking. 

Please continue to pray for her recovery, specifically for her lungs and that junk she has in there will start to go away.