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, 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!

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.

Thursday, July 28, 2016

Healing & Prayer Requests

Thank you for all the prayers! Callie is doing much better, she was discharged Tuesday evening and we have just been watching her closely for any signs of possible bleeding...very nerve racking! She is on a restricted diet and some new meds to help her stomach lining heal.

She will be starting back to school very soon, so please pray that she will be in tip top shape for when school starts back :-) Cardiology follow up will be this coming week and as always we are hoping for stable and great news.

On another note, please pray for our family - we have some very specific financial needs coming up, among so very other important areas of our lives, please provide for the Lord to provide.

Tuesday, July 26, 2016

Surgery & GI Bleed

Callie had her fistula closed a week ago today, which was where her gtube used to be. The surgery went well but the stressed triggered her vomiting syndrome. Well, on the Thursday she started having like brownish stuff in her vomit which I knew it was probably old blood.

Monday morning she was in extreme pain and had lots of brown stuff in her vomit, in addition,  her bowel movement she had was all darkish as well. So, to the ER we went and she was admitted for observation. They believe she had some type of GI bleed, she threw up this morning and it did not have any abnormal color in it, so that is good. We are waiting to hear what they want to do with her.

Please pray for total healing of her tummy and that there will be no more bleeding. Also, that she will start to feel much, much better and for to get her appetite back. There is always something happening, nothing can ever be simple.

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!