Many of you have reached out to the family of Leo Christopher Kaberle (Koufoudakis) with your thoughts, prayers, and concerns, wanting to help in some way. So, here’s what we know at this time.
On Friday, October 26, our little 4-month-old, Leo Kaberle, had a cardiac event requiring his mom, Ryann, to administer CPR. Life squad transported Leo to UCLA-Children’s Hospital and he was placed in the Pediatric ICU (PICU).
After much testing, they determined his heart was compromised from an unknown virus and, according to the hematology team, it has been difficult to pinpoint the exact origin of that virus.
Leo remained stable in PICU Friday and Saturday. Unfortunately, on Sunday, October 29, things took yet another serious turn and our precious Baby Leo again went into cardiac arrest. The team worked on him continuously and he was eventually placed on ECMO, the heart/lung bypass machine, and was administered multiple medications in order to keep him stabilized.
Wednesday, November 1, our little lion again showed his warrior strength as he battled multiple minor seizures beginning at 2am and ending at 2pm. The next day, as Leo continued to fight, he was cleared of seizures and began the process of being weaned off ECMO in order for him to undergo an MRI.
GOOD news on Thursday, November 2, Leo successfully parted ways with his ECMO machine and his heart has continued to beat on its own! He is being closely monitored and sleeping like the beautiful baby he is. We are happy and continually encouraged by his progress and strength.
The doctors, nurses, and entire medical team have been amazing and working tirelessly for their most popular patient, our precious Leo.
As you can imagine, there have been many highs and lows for all of us, and Leo’s dad and mom, Chris and Ryann, continue to take Leo’s journey day by day. There have been many steps forward with some steps back, but Leo’s family and friends are all so very grateful for his strength and fight to stay with us.
While we continue to pray for a full recovery, we know the road for our little Lion will be a long and fierce one. Our beautiful, sweet and happy little Leo is facing a long journey and extended stay at the UCLA hospital, an estimated two months. For those who have asked how they can help, here’s an opportunity to extend a helping hand; while continuing the most important thing, keeping them in your thoughts and prayers!
The Kaberle and Koufoudakis families, extended family, and friends, thank you for all your love and support through this journey. We couldn’t do it without you and we love all of you.
As we know more, we will provide updates here to all who follow Leo’s journey.
UPDATE: November 5, 2023
Every moment Leo is making inch by inch progress and showing his warrior strength. We feel everyone’s prayers, love and healing energy being sent to him!
Due to Leo’s second cardiac arrest, Leo had seizures starting Wednesday, November 1. Over the past several days, Neurology has been closely monitoring and providing medication to control his seizures.
Today, November 5, we received excellent and exciting news from the MRI results. The Neurologist team said “ It is the best MRI news they could hope for.” There was no severe damage. The Neurologist will continue to monitor Leo and begin reducing his seizure medications. These are all good signs but we ask for continued prayers for Leo to have no more seizures as he continues to decrease his medications.
The Respiratory Therapists are discussing removing Leo’s breathing tube Tuesday which moves him even more down the healing path!
The Cardiologists are continuing to monitor his heart and medications as his heart is still inflamed and working its way back to health. Leo’s blood pressure and heart rate remain stable off the ECMO machine. Which are all positive things!!
Leo is still facing a long journey ahead but we are so positive and optimistic of his progress so far! We want to thank you all so much for the support and help for Leo, Ryann and Chris.
We will continue to provide updates as Leo keeps being strong and fighting hard!
UPDATE: November 9, 2023
Our little warrior Leo continues to show how strong he is!
Wonderful news. On Tuesday, November 7, the Respiratory therapist removed Leo’s breathing tube and he is successfully breathing on his own and showing great progress! ❤️
In addition, Leo received another MRI to check his whole body and the doctors reported no concerns. His heart remains inflamed but they’re continuing treatment to Leo’s heart.
The good news continues!!…
Neurology team started to reduce one of the sedative seizure medications on Tuesday, November 7, which put the parents on high alert for seizures, but Leo has been in the clear ever since!
Yesterday, November 8, Leo started physical therapy to start moving his body again. As he has been laying with minimal movement for almost two weeks.
To wrap up this amazing update of Leo’s progress, mama Ryann got to hold Leo and sooth him for the first time since Friday, October 26. This made us all cry tears of joy and encouragement!
Please continue to send your healing thoughts, prayers and love to Leo. We all feel them!
UPDATE: November, 12, 2023
Leo, our little lion, continues to make progress and has far less lines coming out/off him than he did.
On Thursday, November 9, Leo had been 72 hours seizure free and Neurology took off Leo’s EEG leads (all the little electrodes stuck to his head). The neurology team’s goal is to continue lowering his seizure medication – which is a huge positive, but keeps everyone on high alert. Yesterday, November 11, mom noticed some odd behavior from Leo which they are deliberating as to whether it was a clinical seizure. We are staying hopeful he remains seizure free and Leo can ween from all seizure meds eventually.
To avoid a pending infection Leo also had his arterial line and ‘main line’ removed (a multi prong IV that ran to his heart for medication administration and blood draws). Upside of this is Leo only has an IV, feeding tube, and oxygen coming out of him, verses extra lines/tubes. Downside is, our little dude has to get blood draws daily (which he really hates, as we all know he would) that often require multiple pricks due to his tiny veins.
The respiratory team is still monitoring Leo and giving him regular breathing treatments to ensure his lungs are clear from fluid build-up after being on the respirator.
Physical Therapy has started and is going well. Leo has begun moving his arms and legs more. Occupational Therapy also started and within 2 days of oral therapy, Leo, like the little milk monster he is, started eating from a bottle again!
Yesterday Leo was officially moved out of PICU yesterday and is now on the pediatric floor. We think he is enjoying his new room (with a bathroom and shower) because last night Leo was starting to look and act like himself, chatting and smiling! There are still daily hurdles, but our little lion fights hard to overcome them daily! We are hopeful that he will be home before Christmas!
Now you don’t hear much of dad, or see pictures, because in the mix of all this, Chris and half the family went down with COVID. But supermom and grandfather Tony Koufoudakis are powering through as everyone gets better – especially so Chris can be back with his family in a few short days!
Link here for more pictures!
Once again, thank you all for the support, prayers and continued healing thoughts! They have been working and we appreciate it so much.
UPDATE: November 19, 2023
Our little Leo’s roar is louder and stronger each day! He has been giggling, cooing and flashing his gummy smile.
His current team of physicians include cardiologists, neurologists, hematologists, immunologists and rheumatologists. They are all working together, monitoring Leo closely, and making their rounds to ensure he is continuing a full recovery, independently and together.
While Leo is still here, he remains a popular guy! He gets lots of visits from his previous PICU nurses and doctors (who love getting to see his smile and hear his giggles). He also continues to show all his doctors just how strong he is, getting better and better daily, and ready to go home!
Leo’s neurology doctors continue to lower his seizure medication and he is responding wonderfully, remaining seizure free!
He is also tube free now! His feeding tube and oxygen has been removed. He is successfully breathing on his own and back to being the little milk monster he was before.
Physical Therapy has been going well and Leo is back to doing little bouts of tummy time, with some more and more head lifts each day!
Leo’s labs are still being monitored, as the physicians look for continued down trends in his inflammatory markers. The cardiology team also have a CT scheduled next week to review all sides of his heart to make sure the inflammation, aneurysms and clots that are in his heart have not progressed and are remaining stable with his current blood thinning and steroid medications.
Provided labs and the scan come back good the doctors think Leo will be able to go home. We are all hopeful he will get home in time for his mom’s favorite holiday, Thanksgiving!
As for the family members who went down with COVID, they are officially off COVID island, fully recovered and back in action. Most importantly, Dad is back with Leo and Mom!
Again, thank you all for the support. We keep feeling all of the love and strength. ❤️
(more pictures of Leo in the Google photo album here)
UPDATE: November 24, 2023
We have a lot to be thankful for this holiday season, Leo made it home just in time for Thanksgiving with his family!
We are so fortunate for the UCLA Mattel Children’s Hospital doctors and medical staff who tirelessly worked to find answers for Leo’s health. Specialists from multiple departments came together to understand Leo’s unique case and tackle one issue at a time – moving him off life support, resolving his seizures, reducing the inflammation in his coronary arteries and stabilizing his heart so he can come home with his parents and family.
While Leo’s case is unique and will continue to be reviewed, the doctors have concluded that Leo had Atypical Kawasaki disease which created an immense amount of inflammation in his coronary arteries that led to his two cardiac events.
Now that Leo is discharged he will have numerous follow ups with several teams of physicians (cardiology, neurology, hematology, immunology and rheumatology); along with regular lab checks to monitor his inflammation levels and ensure his medications remain at therapeutic levels. Ryann and Chris have also reached out to a Kawasaki Disease specialist in San Diego who is willing to work with Leo on his special case for his long term care and recovery.
Leo the Lion is a miracle and we are so thankful our prayers were answered to get him home. He has a tough road ahead of him but Leo has already shown he can overcome anything. Especially with his strong parents by his side!
Thank you for all the generous donations, prayers and support. Your generosity will certainly ease the hardship for Chris and Ryann, and help provide the avenue to visit the professionals required.
(more pictures of Leo here ❤️)
UPDATE, November 29, 2023: Thank you from the Kaberle’s
Family, friends, acquaintances, and those of you who we have yet had the pleasure to meet, we want to thank you for your generosity.
Your thoughts and prayers were heard and answered, our Leo is home and happy – all we could ever ask for. Our little lion man has a long road ahead, but he has proven he is a strong and fierce little fighter.
We appreciate the love and support you have shown our family during this time. We are genuinely touched by the unexpected generosity and kindness shown to our family. Your support ensures Leo will get treatments from the very best specialists.
There are very few words to express our gratitude, we feel incredibly blessed and from the bottom of our hearts, especially our little Leo’s, THANK YOU.
-Ryann, Chris, Leo & Izzy
(pictures of Leo home, here ❤️)
