Fayden's Journey of the Heart - Supporting the Family!

“Update as of 7-11-2024”

For those unaware the initial heart surgery ASD hole closure was successful, she recovered so well enough for us to leave the hospital for 6 days before we were about to drive back to home to Omaha Nebraska.

12 hours before driving home we had one last checkup and they found some of her heart failure numbers had increased back to concerning levels, they had us check back into the Childrens hospital in St. Louis, and the next day she started to not feel good again, upset stomach and unable to not throw up.

Since then she has had 2 major surgeries and is on a life support device called the Berlin Vlad system, which basically is installed by 4 large cannula tubes onto her heart, which exit through her stomach and these devices pump her heart for her.

These devices are the last option to use while she has to wait for a new heart to arrive for a full heart transplant. The average wait is 4-8+ months if her being on 1A listing in priority because she is in a life saving device and cannot leave the hospital while we wait.

Originally we hoped the original surgery with the large hole was the main issue, and the heart defect she has wasn’t as aggressive, but unfortunately it showed itself to be the main problem.

We are increasing our financial help requested due to now knowing we have to stay and wait here the hospital 7 hours from home. I have had to give up my apartment, and eliminate as many home bills as I could, we are receiving some financial assistance through foundations, but it doesn’t cover everything, and nothing in St. Louis while we wait.

We appreciate all the love, prayers and any support your able to help with, it even sharing our story!

God bless and thank you!

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“Original Statement”

Hello,

My name is Joshua Evans, I am Fayden Evans daddy, she is my beautiful 9 year old girl that I couldn't be more proud of. Recently ( March 22, 2024 ) she was admitted to Children's Hospital of Omaha Nebraska for heart failure. We were taking her into the ER for complaints of her stomach, and throwing up unaware that her heart had greatly declined faster then they expected due to an illness at the end of February.

Fayden says " I Got This"

** Explanation regarding current financial assistance **

Currently we have had to temporarily up-root our lives and move to a new state. We cannot get any financial assistance until she is strong enough, and medically cleared to be added to the transplant list. After she is added to the list it will take at least 3 to 6+ months to receive the gift of a new heart.

Currently her weight, nutrition and overall heart strength is what is preventing us from going on that list right away. That also being said, we are unable to receive financial help from insurance and foundations until we are on that list.

So we are having to continue our bills and financial responsibilities in Omaha, as well as to cover temporary hotel stays, food, and travel between when needed. Unfortunately my job is 85% physical and I am unable to bring my machines with me to work, which heavily impacts my monthly income for both places. Currently we are seeking any help we can, with a goal to cover at least the next 4 months of living and balancing bills between both locations.

All financial assistance will go towards Omaha bills, temporary housing in St. Louis & Travel between the two.

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Story of Fayden's Life and key health moments:

Fayden was born February 22, 2015. She was beautiful but needed a little help with her breathing. She was in NICU for 5 days and then we went home as a family.

Nonnie Angel & Fayden

Not long after we had Fayden home we began to notice physical muscular weakness. Normal milestones like sitting up, moving her head, and learning to walk was delayed. We met with her doctor who recommended physical therapy. Fast forward to her turning 1 1/2 year old. She was finally able to start walking. We were so excited. Off to new adventures!

As time went on, we noticed more physical limitations such as; difficulty climbing up chairs, the couch, stairs, playground equipment, couldn't run or jump and frequently fell and was unable to stop a fall successfully due to low upper body muscle strength.

Picture of Fayden walking first week in CCU

As she began Kindergarten we notified the school of her limitations and we were very happy that the school she was enrolled in had no stairs. The school principal, teachers, nurse, and her fellow classmates went above and beyond to help her in any way she needed. She loves all of them and they love her.

In second grade we were suspicious that there was more to her struggles than just her Hypotonia (aka low muscle tone).

Best Friends!

In the summer of 2023 we reached out to a Pediatric Neurologist at Boystown to find out the true underlying conditions. He recommended a Genetic DNA profile on Fayden, mom and dad. If took 3 months to complete the full DNA analysis and receive the final results. It took over an hour to explain that she had two genetic defects from the Titin gene strand. The Titin gene is the largest protein found in the human body. She had not one, but two Titin gene defects. One variant directly affects her skeletal muscles and the other defect affected her heart.

Fayden's 2nd grade teacher Ms. Ronayne!

The Pediatric Neurologist then recommended we take Fayden to see a cardiologist. The cardiology test results revealed that Fayden has lived all 9 years of her life with a Titin gene defect of her heart, a large hole in the upper right chamber of the heart, and a mitral valve leak on the left side of her heart. At the time, the cardiologist mentioned the hole in the upper right chamber could possibly be repaired by using a catheter to close the hole in her heart in a non-invasive manner. The possibility of needing open heart surgery was not mentioned. He recommended we get this taken care of within 6 to 10 months.

Per his recommendation I scheduled an appointment for January 2024 (following the holidays) to have the catheter procedure scheduled.

Fayden's 1st Grade Teacher Mrs. Hunter!

The appointment at Children's Hospital delivered shocking news. The hole in her heart was much larger and more serious than the previous cardiologist indicated. He then speculated she most likely would need open heart surgery if the catheter procedure was unable to properly close the hole in the heart. This news was emotionally devastating. I asked how much had changed since October 2023 when he compared the Echocardiogram results. He stated not much has changed. We then discussed the dates for the procedures. Since the results of the Echocardiogram were stable with little change. This information led me to consider the following:

Mid March I met with the surgeon and shared the concerns noted above. We discussed urgency vs recovery time and loss of school days. Considering the previous comparison of the echocardiograms there was little change and he did not anticipate much more would change between now and the end of the school year, so we scheduled her heart surgery for May 9th, 2024.

Visit from Fayden's Principle!

Between end of February and near the end of march, she got sick a handful of days, including a hard week with flu like symptoms. We monitored her as we normally would, and she continued to get better and continued going back to school after she felt well enough. After days of complaining about stomach pain, nausea, and then vomiting. We decided to take her to the ER on March 22nd to find the source of the stomach problem.

Mommy & Fayden

The ER doctor did a new Echocardiogram and noticed a severe change from the previous ones, and admitted her to the hospital immediately for heart failure. Yet another gut wrenching set of news and we had no idea what was truly going on with her heart.

Both of the doctors familiar with Fayden's condition were surprised how quick her heart declined considering she had changed so little previously.

Daddy & Fayden

We stayed at Children's Hospital of Omaha for 2 weeks while they continued to treat her heart and evaluate if it could recover itself with proper medical treatment. The first week seemed clinically great, she seemed like her old self, laughing, smiling and making jokes.

Then as we began the second week after Easter, she quickly declined clinically, not able to keep down pills, food, drink, and throwing up constantly, it was then determined that the next major step would be to look into heart transplant options if she is a candidate.

Fayden's Coloring skills!

Unfortunately Children's Hospital of Omaha is currently unable to perform any heart transplants with our insurance. However they went above and beyond to gather resources and reach out to their partners in St. Louis Missouri. After several days of waiting, our insurance approved the care needed for her condition, and St. Louis accepted our transfer after sending over all the data sent from our hospital in Omaha.

The same day as we were approved and accepted, we had to rush to prepare travel arrangements. Fayden was sent via private medical plane transport, while we drove 6.5 hours from Omaha to St. Louis. After arriving we were pleased with the amazing staff at this medical center. They accomplish keeping her stomach and heart rate stable, and vastly improving her overall vitals.

The past 48 hours have been difficult due to them using a breathing mask to help lower her heart rate, but its been hard for her to be forced air, in a uncomfortable mask, and she cannot eat or drink, so her mouth gets extremely dry and she cries and begs for water. Which she could only temporarily have small ice chips and a sponge of water every 4 hours. But it visibly was helping her numbers and was much needed.

Staying strong with new mask

Today April 8th, 2024 she had a procedure to insert a breathing tube in replacement for the breathing mask, which will be more powerful to assist her heart to work less and attempt to recover more. As well as a Catheter procedure to look at her lungs, heart and measure the inside of her chest in areas they needed. This was a risky procedure based on the state her heart is in, but successfully completed both with out any issues.

She now is back in her room stable, heavily sedated and they are working on a new plan on how to repair her heart and get her strong enough to get on a heart transplant list.

Recovery 4-8-2024

All we really need and want from you is to help share her story, and pray for her. Even if you not in a position of financial support, we completely understand, but the most assistance we can receive, the less stress of daily life will help us focus more on Fayden and her needs here with her. For those of you that would prefer Cashapp, PayPal or Venmo etc please feel free to send a message!

Thank you for reading her story, and hope you stay along with us for her future recovery and potentially a new heart! We will continue to update you all on her overall progress.

Daddy & Fayden

God Bless you all!

** SCARE UPDATE 9PM- 4-10-24 **

Pray hard she is fighting hard right now! They are trying to bring down her heart rate and keep her blood pressure where it needs to be, she was shocked 3 times but not for cardiac arrest, but to get her heart pumping the correct rhythm again.

** SCARE UPDATE 11PM 4-10-24 **

Fayden says thumbs up after last nights scare! Overnight went well, all her numbers are stable.

Today we met with the team and briefed us on her plans going forward.

The Cath lab viewed the new photos they needed and the head doctor said it looked feasible to try to plug the hole via catheter. There are “what if’s” as to will it work, and how her heart will respond to putting more blood pressure overload on the lower chambers of the heart after plugging the hole.

Her lower chambers are both weaker due to the titin mutation as well as her lower chambers Havnt had to work as hard her whole life because of the hole and lack of proper blood flow.

Best case scenario :

They place the device which plugs the hole, and her heart/pressure responds in a positive way, they leave the device if they are confident it is seated properly. She should slowly start showing more positive blood flow to vital areas of the body, specifically the stomach and allow more healing to her heart.

Worst case scenario:

The hole can’t be properly plugged, or her pressure is too high when it gets plugged, they would remove the device, and if it was an emergency they would place her on an echmo machine which would temporarily take over all heart function, and then we would be looking at the more risky open heart surgery and placing her on a Berlin device that takes over her heart function and attempts to take the load off her heart for healing; but that is usually only used to get her to the heart transplant list and to get healthy enough to be put on the list.

Either way we still have options, and we just pray if the procedure is tomorrow that they are able to sit the device and that her heart can handle it.

Thanks for the love and prayers this far! ❤️❤️‍

** UPDATE - 10AM 4-12-24 **

Fayden is going back early for her procedure, so please have her in your mind and pray for her extra hard today! I will be giving updates as I get them roughly every 30-45 mins, the procedure is roughly 3-4+ hours.

We love you Fay Fay!

** UPDATE CATHETER PROCEDURE 12PM to 2PM - 4-12-24 **

Update 1:

They took pressures of her heart with the balloon in place of the hole, they are currently measuring and making plans, and looking at the ASD hole making a plan of placing the device.

Still unknown so far but she is stable and the catheter lines are in place.

Update 2:

They are attempting to install the device, she is still stable, we pray they can sit it in place and it’s firm while they manage and watch her blood/heart pressure.

Update 3:

Unfortunately they were unable to seat the device, they attempted a 28mm device and it is too close to the valve to leave it without risk. They attempted a 26mm and it also didn’t fit properly either.

Her pressure was higher with the baloon test, which tells us they are now nervous about closing the hole surgically as well as how her heart will withstand the new pressures.

Unfortunately this means back to the drawing board and into even more risk on the next attempt.

I appreciate them making the attempt, but breaks my heart she won’t see any healing or recovering the in the short term.

Her heart had to be shocked several times because she did go into that irregular heart beat. She’s stable currently but I am nervous because her delirium is starting to show and see things, and I’m afraid her morale is going start wavering due to the unable to eat and drink, and just overall mad and sad.

** Update Unexpected Open Heart surgery 5PM - 4-12-24 **

Without even time to process the failure of the catheter procedure and trying to wrap our heads around the next steps which we were expecting days of processing the failure... The team came and got us not even an hour after the failure and said we would like to take her back to surgery to go in and close the hole.

The amount of risks with the open heart surgery are MUCH higher then the non invasive catheter close. Instantly was terrified with the unknown of would she make it through, or needing machine help to keep her alive.

We agreed that we need to let go and let GOD take over. She is going back to surgery in an hour and 30 mins, will be expected to take 4-5+ hours to close the hole and monitor her vitals.

** Update After Open heart surgery update 10PM 4-12-24 **

MY baby is the strongest girl I’ve ever met. SO FAR SO GOOD - GOD IS GOOD.

She is currently back in ICU, her hole has been surgically closed, she is not on ANY heart assist machines, and her heart is beating on its own!

Her chest cavity is still open and taped, to allow the heart and other organs swelling to shrink before they close it on Sunday.

We still have a long road, and possible ups and downs and scares, but her coming out without any assist is a huge win!

Thanks everyone for your love, support and prayers! ❤️❤️‍

** Update 4-13-24 **

Visiting Fayden today, overnight she did extremely well, had a fever of 103.6 for awhile but is common after a major surgery. They iced her down, shes in on medication and it’s came down to the normal level.

They are closing her chest tomorrow morning at 7 am, sometime can cause issues or pressure since they are squeezing the heart and organs, but they will be ready for anything that happens. So tonight and tomorrow please continue to deep pray for no major issues occur.

Will keep you all updated! Thanks for the love, support and prayers!

❤️❤️‍

Major updates:

Update - Chest Cavity Closed - 4-14-2024

God is GOOD, her chest was successfully closed, and they used the words she did “perfect” They had to add a bit more ventilation due to the secretions in her lungs, but wasn’t surprising.

She slept fully yesterday and will today too. May start coming out of her relax/sleepy medication tomorrow.

Now the plan is to slowly let her heal/recover and see how her heart does working a lot less and being more efficient, and slowly coming off medication and lung ventilation.

I just want to say THANK YOU for all the prayers, words, love and donations you have all given to her and our family thus far. I wish I could show my appreciation to each individual person but thank you all so much. ❤️❤️‍

Update - More awake today! 4-17-2024

Fay Fay is more awake today! She had another episode last night that needed to be shocked once to get her heart rhythm back where it should be, it only took one low shock and they were not worried at all, it’s normal for a child to have that happen how sick her heart is/was.

She wants to say thank you all for your love, prayers and support! We will continue to see up and down days, but these UP days will keep us moving forward and make us feel happy for her!

She’s still so hungry and thirsty since it’s been over 2 weeks since she’s been able to eat or drink, so it’s mostly all she attempted to say. But it helps to tell her she’s slowly healing and everyday is closer to getting that tube out of her mouth, and closer to eating and drinking!

Thank you all for your prayers love and support!

Update - Breathing tube out! 4-20-2024

Today is a good day!

Filled with anxiety, but her breathing tube came out today! I missed that smile and her voice! Her voice is low pitched and really coarse, but over the next few days it will slowly return.

She had this amazing story she felt days ago that she felt like she went to hell, and the devil was speaking to her, and she was praying for Jesus to help, and he showed up and brought her out of hell and saved her life.

I hope she’s able to voice the story again in a few days cause it was so profound and real. It had me in tears as she was so emotional explaining it. To think that happened days ago and she hasn’t been able to explain or talk about it.

But Jesus is there for her in every way! Will have an update in a day or 2 if nothing major changes! Next goals are just to slowly wean off medication and test her stomach for her getting closer to eating and drinking!

Much love from Fay Fay! ❤️❤️‍

Major Update Heart Arrythmia Scare 4-21-2024

Fayden is having another one of those heart arrhythmias and touched 290 heart rate and had to get shocked, her heart is still 200+ heart rate and trying to bring it down with medicine. It keeps bouncing back up, will update shortly.

They just cannot get Fayden’s heart back into rhythm, this freaking sucks because they have exhausted all they can and have to put the breathing tube back down her throat to help take more stress off the heart and do a lot more sedation and muscle relaxers to help take that stress off the heart.

She didn’t get to have it out but 2 days, and there wasn’t a direct cause, her heart was doing fine, just this out of rhythm issue really tore her heart up tonight with such high heart rate for over 8-10+ hours.

They about to put her to sleep and gonna do the breathing tube, and do all the heavy medication and pray that will finally help her heart settle down.

Small update, they called a couple of hours ago and said as they were getting ready to do echmo with the surgeons, her heart rate went down to 120’s and stabilized for a good hour, and they paused the echmo procedure.

I called a few minutes ago to check on an update, she is still completely sedated and paralyzed, her heart rate still around 120-140 but still had the arrhythmias issue.

They just waiting to see if it continues to stay down or shoots back up. If it shoots back up they will most likely activate the echmo to take over that.

Will update more when I find out, I’m mentally drained, exhausted. I keep praying for both fayden and myself because I am in a fragile place.

Major Recovery Update - 4-23-2024

I wanted to wait awhile before I made this post because of how sporadic her heart rate has been the past 36 hours, and many times we had short lived good numbers.

We called last night around 12:20am we were waiting for her next shot of a new medicine to help with that irregular heart rate that seemed to help with the first one…

When we called to see how she did, the night nurse said they did not even end up using it because her heart rate went down to 85-89 and steady.

Full disclosure, she has not touched under 105 the entire time we have been at the hospital, but they said this is amazing because it’s what she should be at for her size. Granted she is fully sedated etc, but it’s a much needed rest!

Right now we are cautiously optimistic and just gonna hold onto the small wins. We are meeting with a few doctors and specialists shortly to try and get some short,medium, and long term plans.

Thanks for your love and support! ❤️

Recovery update 4-24-2024

Small update, fayden is still doing great! She’s been maintaining an amazing set of numbers currently (89ish heart rate, 80/45ish blood pressure, and brain/kidney numbers also 80+) she has been awake and weening off of sedation, been active on her tablet and FaceTiming us when we are not here.

The goal is still for a miracle to help her current heart get healthy enough on its own to maybe someday get on oral medication and can make her current heart last as long as possible before a transplant is needed.

However, they are already planning the heart transplant information, they are sending specialists to me all the time asking questions, making sure we understand the pre and post transplant information and life changing lifestyle for her and us if she does get a new heart.

8-10 new medications a day for the first year after a transplant, and 2-5 after the first year depending what her body and heart needs.

Also what she can and can’t eat, and can’t participate in etc..

It’s still gonna be a really long road, but we just pray that her heart arrhythmia’s don’t happen anymore, and if they do they are controllable unlike the other night.

As always we appreciate all words, prayers and help you have shown us, we will continue to get through this together.

❤️❤️‍