Kokua for Baby Jhene'

Baby Jhené’s Journey

On Christmas Day 2023, three month old baby Jhené was rushed to the ER at Wilcox Memorial Hospital on Kauai for labored breathing. Due to the severity of her symptoms she was transported via medivac to Kapiolani Hospital on Oahu where she was diagnosed with Dilated Cardiomyopathy.

Since being transported to Kapiolani Hospital, baby Jhené has been sedated and on many different medications along with a breathing and feeding tube in attempts to stabilize her numbers. With no improvements, the next step was to have baby Jhené transported via medivac to Stanford Lucile Packard Children’s Hospital in California to await a heart transplant.

After multiple delays, baby Jhené successfully arrived at Stanford Lucile Packard Children’s Hospital on January 13th. On January 16th, baby Jhené underwent surgery to have a Ventricular Assist Device put in to help her heart pump blood to the rest of her body. During the procedure, the surgeons became concerned with her right ventricle so she remains under close observation in the ICU.

Baby Jhené will remain at Stanford Lucile Packard Children’s Hospital until a heart donor becomes available for her. After transplantation, she will need to stay for a minimum of 3-4 months for observation and various testing before being cleared to return home. As an organ recipient, baby Jhené will require a lifetime of medications, doctor visits and testing.

Donations of any amount are greatly appreciated. We kindly ask if you could share baby Jhené’s Journey so we can help give her a fighting chance. All donations will go directly to Kayla and Braxton, baby Jhené’s parents, to help with any medical co-pays or bills not covered by insurance, housing, transportation and other costs they endure while focusing on getting baby Jhené the help she needs. You may also send contributions directly to them by Venmo (@braxtonfischer) or PayPal (@Kayla Chang). Thank you for taking the time to read about my sweet granddaughter and please continue to pray with us for Jhené

Update*

Aloha,

it’s with joyful hearts that we (Kayla&Braxton) would like to update everyone on the amazing progress that Jhené has achieved since arriving at Lucile Packard Children’s Hospital.

As mentioned above, Jhené was intubated for well over a month but as of 1/30/24 her breathing tube was finally removed. Then transitioned to CPAP machine —> Highflow Nasal Cannulas —> Nasal Cannulas and as of 2/15/24 she is currently off respiratory support and breathing on her very own.

Since extubation, she has overcome the weaning of most sedations (just 2 more to go) and has also recovered quite well post surgery, delayed chest closure (now closed), respiratory infection, atelectasis, the removal of 1 of 2 double lumen PICCS, sump, IV, LA & RA lines, chest tube and clipped pacer wires..

With these tremendous milestones, there was and still are risks present. The main risks that we continue to keep a close eye for include withdrawal, other infections and stroke.

She has since become much more stable and well supported from her Ventricular Assist Device (VAD).

Also we’ve recently received confirmation that, Jhené is officially active on the heart transplant waitlist & will remain in the ICU until further care is appropriate.

Our current goals are to maintain stability and catch up on Nutrition + Growth through mother’s milk, daily physical and occupational therapies.

We will continue to provide updates along our journey but most of all we would like to extend our warmest and humble thank yous to each and everyone for your generous donations&prayers ❤️