Christmas was especially special this year for four-year-old Phalynn because she spent it at home for the first time ever after living in the hospital since birth.
Phalynn was born at only 28-weeks and was rushed right into the NICU where she spent the next year and a half. She arrived at Ranken Jordan at 15 months old suffering from chronic respiratory failure. Her lungs had not fully grown, and she needed a ventilator to breathe, “She had a heavy load of medical needs and many struggles, but from the outside you would never know,” says her nurse practitioner, Ellie Brown. She has sass about her that pulls you in. She would smile at you and engage with everyone she met. All members of staff were her best friend.” Around age four, Phalynn was progressing and her health began to stabilize. Her medical team began to wean her from her ventilator. “We failed repeatedly,” Ellie says. “Every trial resulted in another issue. Her airway would collapse, or she couldn’t get over her thick secretions.”
Working with children with medical complications takes patience. Not all medical teams would have continued Phalynn’s trials. Ellie persisted. “With assistance from her Pulmonologist, Dr. Sobush, we finally found the right medicine that worked for her, and Phalynn started weaning off her ventilator with success. She started off it for just a few minutes a day, then we gradually weaned her more and more. Each wean not being sure if she could do it, but knowing we had to keep pushing, keep trying. Now we are very proud to say she is entirely ventilator-free. She walks around on her own just like all the other kids her age.”
Phalynn still has a tracheostomy and uses a Passy Muir Valve (PMV) to speak. Like her ventilator weaning, using the PMV took patience and perseverance. “We would try it, and she wouldn’t tolerate, then we’d try again, and she couldn’t exhale,” says Ellie. “We tried multiple times over a year. On a consult visit with Dr. Sobush, we decided to attempt again. After the PMV was placed, she didn’t react like before, but began to scream – a good scream. She changed her inflection and began to sing! She’s such a ham! She loved the sound of her own voice. We called her speech pathologist who came running, and she and everyone in the room had tears in their eyes when they heard Phalynn’s voice so clear.” Later that day Phalynn was able to video chat with her mom and actually sing to her clearer than ever before.
With the work of her speech pathologist, Cristal Brown, Phalynn continues to use sign language less and use more words. She knows her alphabet, small phrases, and now “I am a hot mess” and “ I love mommy” are common phrases.
Every member of Ranken Jordan has a certain sense of joy when speaking of Phalynn. We are all very proud to finally be able to discharge her home with mom where they can be a family and she can continue to grow to be a strong, independent, and sassy girl.