One of our patients, Amiri, was recently discharged from our inpatient unit, graduating to outpatient care in our Technology Dependent Clinic. Amiri was born at just 24 weeks gestation and was very fragile at birth. When she was nine months old, she was transferred to a long-term care facility until she was finally transferred to La  Rabida at 13 months old.

One of the primary reasons Amiri came to La Rabida was to ween her ventilator use. When she first arrived, she was relying on it 24 hours a day. Now she can be off the ventilator for several hours a day – a great achievement! Additionally, because Amiri is exclusively fed through a gastronomy tube the team had to work to regulate and balance her feeding to ensure she was getting enough nutrition without over-feeding her either.

“The team at La Rabida was great,” says Amiri’s mom, Selena. “They really have the best care for kids like Amiri.”

Amiri’s care team managed her medical needs, kept her medically stable, and helped her grow, develop, and thrive, all while supporting her parents at the same time. A big part of that included preparing them for when Amiri got discharged, including how to manage her tracheostomy, ventilator, and gastrostomy feeding tube.

Amiri was discharged from our inpatient unit in November 2023, graduating to outpatient care in our Technology Dependent Clinic, and while it’s a wonderful milestone to celebrate, finally going home came with a lot of work and preparation for her parents.

From Fragile to Fierce

Amiri was born at 24 weeks gestation and was very fragile at birth. When she was nine months old she was transferred to a long-term care facility until she was finally transferred to La Rabida when she was 13 months old.

“Being able to be with Amiri was the best part of being at La Rabida,” says Selena. “Seeing how the nurses and therapists were with her was really helpful.”

In addition to her medical care, Amiri received speech, physical, and occupational therapy, along with support from a respiratory therapist and infant development specialist. Her entire care team was focused on building her skills globally to move, interact, and play.

Achieving typical developmental milestones like rolling over, crawling, pulling herself up to stand, and communicating required hard work. These goals required regular therapies to strengthen Amiri’s gross motor, fine motor, social-emotional, and communication skills.

Today, she’s doing all this and more. She loves to wave to people and uses sign language to communicate when she wants to play and when she’s done with something.

“Amiri was a beacon of joy while she was here,” says Angie, infant development specialist. “Even with all she was dealing with, all the medical technology she was connected to, Amiri was always happy to see you and had a big smile on her face.”

Through it all, Amiri’s parents depended on her care team to help them learn about caring for Amiri on their own. They became experts at playing and engaging with their daughter while keeping her medically safe.

“It felt so good the day we were discharged,” says Selena. “I was so happy to know I was finally going to take my baby home.”

Upon discharge Amiri was still dependent on her tracheostomy, ventilator, and gastrostomy feeding tube. She’ll continue to visit our Technology Dependent Clinic in our outpatient center where she’ll meet with her entire La Rabida care team all under one roof including her primary care physician, pulmonologist, dietitian, speech-language therapist, respiratory therapist, and social worker.

This story was featured in the Winter 2024 issue of Currents. Read the full issue here.