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 6, 2018

Planning, Planning and More Planning....

Scheduling for Callie's next trip to California is in full force. We will be leaving in early January, for a full 2 weeks of appointments. Pretty much everyday she is being seen in the hospital for an appointment, not to mention the overnight stay she will have after her heart cath. She will be having a repeat heart cath, repeat MRI, plus numerous other tests that I will explain as it gets closer. She will be seen in the single ventricle program, which is a positive thing, it basically evaluates her overall to get a baseline and hopefully ward off future issues. There will be some talk with transplant also, but mainly for us to learn more. Everyone's hope is transplant can be put off for many years. But, we will know more after her cath and MRI. If I said, we were looking forward to this trip - I would be LYING - none of us truly want to go. For many reasons we were just there but also fear of the unknown. This is a big appointment for Callie and we are praying for BIG things, because God is in control and not what some specialist says about my child. There is so much more to her than what they read on paper, she is constantly analyzed from head to toe. While it is a necessary evil to ensure she has the best care, you always wish it wasn't needed. 

Callie has been doing well on her half tablet of Tadalafil (pulmonary hypertension med). We did have one instance where they tried to go up on her dosage and it triggered a vomiting episode, so we went back down to the half tablet and that is where we will be staying. She seems to be having good results from the medication, more energy and increased oxygen saturations. Also, enjoying GYMNASTICS!!! We are hopeful that these are good indications that things are improving for her and January will be much better results than June. We did choose not to start her on the 2nd medication as previously discussed, only because we would like to see what her results are in January. The medication has many side effects and its just one of those decision as parents you have to make sometimes, and pray like hell it was the right one!

She recently had a CT scan of her lungs and a barium swallow. The CT scan was to check for chronic lung damage and that test seems to have come back normal. Her barium swallow was to check for aspiration and that was also normal. We are so thankful for these results and continue pray that her tests to come in the coming months , yield wonderful results as well. Tomorrow she has a cardiology visit, praying for a great check up! Thanks for checking in and I will continue to update. 

**We are working on a t-shirt fundraiser for our upcoming trip - so keep an eye out for the shirts. They will be super AWESOME!!! 

Friday, July 20, 2018

2 weeks and counting

Callie has been on her new medicine, Adcirca (aka Tadalafil) now for almost 3 weeks. The first few days she was experiencing some negative side effects, headaches and nausea - thankfully all those side effects have stopped now. Around day 7 we started to notice some changes in her, seems to have increased energy and talking way more. For those who do not realize it, talking takes a lot of lung capacity, which Callie lacks a little - So, if this is working and increasing blood flow to her lungs then she potentially is talking with more ease. Then on the flip side, there are days when I'm not sure I notice any difference. Which can be upsetting, but the real test will be when she starts back to school, that should really tell us how much benefit she is receiving from it. We continue to remain hopefully this medicine is doing great things for her and by January she will look like a different kid inside. That has been my prayer since all this came about and I will keep praying!

We are finally settling back in after our trip to California and after having our world rocked from the news received from California. Her team did call from out there to notify me, they hope to start scheduling all her appointments for January in the next couple of weeks or so. We have to plan to be out there for around 3 weeks due to the fact, they want her seen by the single ventricle program and all the docs in that program. Then, evaluating for transplant - which hopefully will be put on the back burner, if this medicine works for her - please keep praying. She also has to have her MRI and heart cath. This all will be a lot for her and us, but will get through it.

Callie will have a follow up with her cardiologist in about 2 wks. Will update then, please keep praying for sweet girl. Thank you all for your continued prayers, just because we are home things emotionally do not get easier, especially when you look at this sweet, happy face and know there is such a battle going on inside her tiny body. 

Monday, June 25, 2018

Wednesday Conference on June 20th, 2018

First off, I know many of you have been wondering what was said in regards to Callie's MRI results, I have lots of you messaging me, texts and we are so thankful so many are thinking and praying for her. There are some circumstances that are just a lot to take in and you need time to process, this would be one of those times. Not to mention, it is a lot to explain and can be somewhat confusing. So, I will do my best to explain :-) So, since my last update, Callie had her MRI and it was an interesting experience ;-) It was her 1st MRI so the loud noises, etc freaked her out in the beginning but she managed to make it through. Callie's MRI raised numerous questions, so they team decided they needed to get the whole team together and conference on her. Multiple cardiologists, her cath doctor and surgeon were present during this meeting.

Some of you may know and some may not, but Callie has a very unique and complicated set of heart defects. There are very few with all the combinations of defects that Callie has, if any at all. Years ago, we were told Callie would never have her bidirectional Glenn, then guess what, a year later -  she was able to have that surgery! Then, we were told, she may not be a candidate for the Fontan surgery and if she did make it there, she would be VERY high risk. Guess what, she rec'd her fenestrated Fontan Jan. 2016. God has blessed us with an amazing kid and we praise him for her feisty self. And this brings me to the MRI & cath results.....

Currently, Callie has a fenestrated Fontan - simply meaning if you think of a pipe as her Fontan running up and down, she has whole in the side of it, some call it a pop off - basically meaning she can still mix her blue and red blood as her body sees fit. When she had her Fontan back in Jan. 2016 this was needed or her Fontan would have failed. Now, her body is using that fenestration too much, so the blood goes up the Fontan and instead of continuing up to feed into her pulmonary arteries, it is simply using the fenestration as an escape route, essentially using the path of least resistance. So, instead of her lungs getting the blue blood it needs to pick up oxygen, her lungs are mainly getting red oxygenated blood - so once it reaches the lungs, it cannot pick up anymore oxygen - this is one of the reasons why are oxygen is lower than what it should be. The blue blood just keeps getting recirculated into the body. They saw some narrowing in certain places but nothing that should keep the blood from where it should be going. In Addition, she has developed collateral vessels to her left lung and this is a huge problem , so on the left side she is getting a lot of her blood flow through these vessels instead of using her Fontan circuit. Long term, this is very bad. They did coil off (get rid of) 6 collaterals in the cath lab but we were told she has a lot left. They coiled off the biggest ones. Which hopefully by coiling these off, will help the blood flow go where it is suppose to.

They team discussed surgical options for her and at the moment her surgeon feels there is nothing he can improve her situation. He may re-evaluated at a later date if needed. Secondly, they talked if there was a way to make her fenestration smaller so she would use it less, at the moment not really. But, her cath doctor will think more about possibly closing her current one and then making a new smaller hole, so she can still mix her blue and red blood as her body needs to. Thirdly, they also discussed heart transplant.

The current plan is to start Callie on a vasodilator medication, the hope is this medication will help her rely less on collaterals and use the Fenestration less and utilize her Fontan circuit. Please pray hard this medication works, pray hard. We are still waiting on insurance to approve the medication, please pray it comes very soon - so, she can start it. 6 months from the date she starts the medication, we have to return to California for another heart cath and maybe MRI, to see how the medication is working. Which is looking like that will be January. While we are there in January, they also want her to be evaluated for transplant, to see if she is even a heart transplant candidate. Not saying, that she is to that point yet because she is not. Everyone actually is amazed at how great she looks and is doing despite how she looks on the inside. Big praise there! This way they will know if she is not a transplant candidate, they have to do everything in their power to optimize her as she is, whether that means more surgery or whatever. If it comes down to she needs a transplant, I pray she is a candidate but I also hope that is something that can be put off for a very, very, long time!!!!

My daily prayer for the next 6 mths, is that the Lord will do amazing and unexplainable things in that little body of hers, that this medication will be hugely beneficial to her and that the changes will be seen. And that the talk of transplant will be put on the back burner. I know we serve a great God and that is 100% seen through Callie's life.

In 6 months when we return to California, this will be at least a 2-3 week trip due to all the testing and extensive appointments that will need to be done. By the time we financially get back on our feet from this trip, we will be preparing for our next trip. Please pray the Lord provides for all that is needed financially during this time. I am leaving the GoFundMe website up and activate to help prepare for the next trip, the link is on the right hand set of the page, just click on Callie's Heart Fund if you feel led to give. I also will post a paypal link as I have many ask about sending funds via paypal. 

I know I say it a lot, but it is 100% heartfelt - We are forever grateful to the continue support of each and everyone of you over the years. I hope most of what I said, makes sense ;-)

Please keep our sweet girl and our family in your prayers over the next 6 months!

Friday, June 8, 2018

Staying in Cali for a little longer....

Due to some results of Callie's heart Cath, her cardiologist at home and her team in California felt it best if she remained here for additional testing. To give a little detail of her heart cath results , her narrowing in her aorta required some ballooning and more than likely will need to be surgical address in the future. Her fenestration was tested to see if it could be closed but this increased her fontan pressure to high, therefore they did not close the fenestration.

Her oxygen saturation is lower than what it should be even with having a fenestration. Therefore, she will be meeting with a cardiologist here who is a Pulmonary vascular specialist. He has ordered a cardiac MRI which will be performed on Monday and we will meet with him on Tuesday. She has already completed another test that he ordered also, which watches what her oxygen does after walking consistently for about 5 min. The team here in California also wanted her to meet with a pulmonologist and we are hopefully meeting them also on Tuesday.

All this is to determine what they can do to get her oxygen up to where it should be for her current fenestrated fontan anatomy. Something to keep mind, Callie was a high risk fontan to begin with and we hope staying and seeing these specialists will keep us ahead of any majors problems in the future.

Please pray for Callie as she has to remain still for 1 hour for this MRI and everyone's goal is to not to have to sedate her during this procedure.

Thank you for the continue prayers and support during this time. We are all ready to be home but we know this is where Callie needs to be at the current moment. We are making the best out of trip, doing fun things with her when we can. Very thankful for the Ronald McDonald House, she is having a blast playing in the playroom every afternoon and has made a few friends😊 We are thankful she is where she needs to be and we have such a great team of doctors standing behind her, they have all been working so diligently to get everything schedule as quick as possible, so we can hopefully get home soon.

As soon as we know more, I will update.

Monday, June 4, 2018

Pre-Op Day for Heart Cath

Pre-op went well, everyone was very pleased with how Callie is doing. They all commented on how great she looks😊 So happy!! Her heart cath is scheduled for 8am tomorrow and prayers that we do not get bumped. Prayers for an easy cath with no intervention needed and she can be discharged the same day to rest at the Ronald McDonald House.

Callie is in great spirits! Here are some pics from today.

Tuesday, May 29, 2018

Callie Goes To California

We are at that time for another trip to California. It has been 2.5 years since Callie's last surgery the fenestrated Fontan. Callie has been doing wonderful and we could not be more happy with her progress since the Fontan.

Due to the complexity of her heart condition, her team in California feels it is important for her to be seen by them and have a diagnostic heart cath. We are praying for a great trip with results to match.

We will be leaving in just a few days for our trip, Callie has appointments starting on Monday, June 4th and her heart cath will be Tuesday, June 5th. Will you please join me in praying for her and our family? No matter how many times you make this trip, it never gets easier but we are always determined to make the best out of it! Excited for her team in California to see her and how great she is doing.

Callie has been taking horse back riding lessons since March and is absolutely loving it. She has the best instructor in the world! She just finished up 4th grade with A/B honor roll for the whole year and would have had perfect attendance, if her Mom didn't pull her out during flu season. Wanted to protect her as much as we could. Super proud of our girl !

If you would like to help support our family financially during this next trip, here is the link:


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!