Kaydens Journey to a Whole Heart

Happy 9 month anniversary to Kayden’s new heart!! And what better way to celebrate then going back to school 😁 Kayden 10th & Avery 7th.

We had a busy summer with a lot of appointments but they have definitely started to slow down. His lung fungal infection is almost totally subsided. Next month he has a heart cath and pancreas biopsy.

Days like today we are super thankful for his donor and their famliy ❤️

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Thrilled, honored, blessed to have this warrior back on the mats with us! Kayden embodies courage, grace under pressure, and dedication. His toughness is unmatched. Welcome back young man and welcome back to Dad as well🙏🏻❤️👊🏼🔥

www.queencityjiujitsu.com

“Fires are lit in our lives, and they can burn to shine light or cause destruction. We get to decide which purpose they will serve.”

Today marks 12 years since Kayden had his dialysis tube removed following the rough path of his 3rd surgery. A reminder of Kayden’s perseverance and how his body likes to operate!

He is officially back in jujitsu and hoping to be back wrestling next week. Today he had his 6 month transplant follow up. EKG/Echo/heart function looks great❤️ He continues to battle this fungal infection now with some questionable pancreas involvement. Plan of care pending some more testing.

Happy 6 months to Kaydens beautiful new heart!! And THANK YOU to the amazing donor and their family for this selfless gift. We can officially write the donors family today in hopes they will want to one day hear his story and meet him.

Kayden had his 6 month cardiac catheterization and biopsy this week showing ZERO rejection❤️

He had some repeat scans that showed his fungal infection is still not controlled and now some bacteria to accompany it. His transplant and infectious disease docs are continuing to working on a plan.

Pardon my French but Kayden had a sh*tty weekend. This fungal infection is no joke. He was totally wiped out with pain, ear/chest fluid and overall exhaustion. We were minutes away from a hospitalization but Kayden so NO WAY. Today he took a final for school, got tubes placed in both ears and went to OT for the first time. A very special friend of mine sent me this quote and it couldn’t be more true.

We are HOME❤️ Exhausted from a long week but so happy to be back in our own beds!! Thank you everyone for your support,thoughts and prayers.

Bronchoscopy done, everything went as planned. They collected lung and nodule tissue samples for a biopsy. He was started on an IV anti-fungal medication because the culture of his chest infection/abscess showed fungal growth. Anti-fungal therapy is tricky because it affects the absorption of some of his other medications and is rough on the liver and kidneys. Kayden will be in the hospital for a few more days to transition him to an oral anti-fungal and to fine tune the treatment plan.

And on a happier note….Kayden was cleared to start occupational therapy on his hand!! Bring on the driving, paddle boarding, jujutsu, wresting and being a 15 year old boy ❤️

We will be spending this rainy weekend at Levine Children’s. Everything went well on Thursday. They are treating Kayden on high doses of IV antibiotics for the abscess and possible osteomyelitis (bone infection) to his sternum. Plan to do the bronchoscopy early next week and then hopefully we can go home!

On Sunday we joked that this week was going to be our first one not having to go to a doctor’s appointment or hospital visit since the transplant. Well we should have knocked on wood!!

Long story short Kayden was admitted to Levine Childrens this afternoon. He had a chest CT scan that showed inflammation and an abscess to his costolsternal cartage (chest/rib connection). It also showed pulmonary(lung) nodules, suspected to be a fungal infection.

Tomorrow he will have the abscess surgically drained and they will perform a bronchoscopy to further investigate the pulmonary nodules. In the meantime they are running tons of tests and starting him on IV antibiotics.

As always Kayden’s strength amazes me. He’s in great spirits and just wants to jump this hurdle and get back to living life.

Kayden had his first “sickness” post transplant this week. Fever, cough and fatigue. Normally we’d just ride it out but being super immunocompromised he immediately has to been seen by his doctors and can’t go to school.

But he is back on his feet again and NO MORE WOUND VAC!!!!! Starting hand/wrist OT in 2-3 weeks❤️

Today is the start of ❗️

Approximately 500 pediatric heart transplants are performed in the United States each year. This life-changing procedure aims to help children with complex Congenital Heart Defects or other heart diseases live a fuller and longer life🫀

Help us spread awareness of the importance of pediatric transplants and help us end the waiting list! Learn more at the link below⬇️

https://donatelife.net/how-you-can-help/national-observances-celebrations/pediatric-transplant-week/ #:~:text=National%20Pediatric%20Transplant%20Week%202024%20will%20be%20held%20April%2021%20%E2%80%93%2027.

First 5k for this new heart ❤️ We didn’t run as fast as we planned because of the recent skin graft and some chest inflammation BUT we never stopped.

Instead of letting your hardships and failures discourage or exhaust you, let them inspire you.

Home from the hospital and comfortably resting. Today Kayden had, what we hope is our final skin graft to his hand and the last week of this wound vac!!

Hard to believe this was 12 years ago. A very long Hopkins stay after Kayden’s Fontan operation.

Today we are reminded how far we have come at LCH-patiently waiting during Kayden’s cardiac catheterization and biopsy. Thankful for his amazing donor and team taking care of him♥️

Happy National Organ Donation Month!!
Spring Break 2024 made possible by an amazing person who selflessly donated their ♥️ to Kayden.

How far we have come….Exactly 12 years ago after his 3rd open heart surgery (Fontan) at Hopkins.

Happy 3 month heart anniversary!! To celebrate we took our hearts for a run ❤️

“Hard work spotlights the character of people: some turn up their sleeves, some turn up their noses, and some don’t turn up at all.”

Post workout shake with NoDa

Kayden had a cardiac catheterization and biopsy yesterday. His heart pressures continue to normalize and his EKG, echocardiogram, and lab work looked good!

Although acute rejection can happen anytime after transplant, it most commonly occurs in the first three to six months. His biopsy showed Grade 1R rejection, this represents a greater immune system response with no cell damage. His C4d lab that shows antibody-mediated rejection was negative.

So this is all good news-we continue to wean him off some meds❤️

After the cath he was taken back to the OR for a synthetic skin graft placement to the portion of the hand not healing. They also placed another wound vac to aid the cellular movement and healing process. Needless to say, he is not happy about this but we WILL get there.



Last night Kayden got to be the honorary captain at Charlotte FC’s home opening match!! Thank you so much Charlotte FC and Levine Children's for this AMAZING opportunity ❤️

“You climb mountains with your feet, but can only move them with your soul.”

Put our hero heart to the test today. Climbing 3 miles with very minimal breaks ❤️ Still battling the “hand mountain” as we head back to LCH next week for Integra skin placement with another wound vac.

Today is National Donor Day. Forever grateful for Kaydens heart donor and their family ❤️

Heart transplant follow up today! Ran into our awesome heart surgeon. Labs, ekg, echo all looking good❤️ Hoping to be cleared for school by March🎉

“You will always be the miracle that makes our life complete.”

Heart biopsy showing ZERO rejection❤️ And wound vac finally off!!

Hand debrievement and skin graft done! He did great. Homeward bound in a few to continue to heal ❤️

A visit from NoDa and Nico (not pictured 😉) was exactly what Kayden needed today❤️🐶❤️