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Bringing Ella Home – Respiratory

Bringing Ella Home – Respiratory

Family celebrates infant daughter’s homecoming with respiratory support from PromptCare

When Alicia and Tom welcomed their newborn daughter, Ella, they faced an immediate crisis. Ella struggled to breathe, and doctors initially suspected water in her lungs. The reality was far more severe—Ella was born with congenital central hypoventilation syndrome, a rare neurological disorder that disrupts breathing. As her parents were guided to the recovery room, Ella’s earliest days were marked by a battle for survival in the NICU.

Daylight turned to night before they saw their daughter again, intubated and exhausted. Within 24 hours, Ella was transported to Connecticut Children’s Medical Center to undergo further testing. Her struggle to breathe led her to pediatric specialists at Maria Fareri Children’s Hospital in Valhalla, N.Y., where doctors performed a tracheostomy, creating an airway in her throat to ensure she could breathe more effectively. The tube inserted through this opening provides a direct path for air to reach her lungs.

Ella’s diagnosis was later confirmed through genetic testing, revealing the presence of mutations in the PHOX2B gene, which is consistent with the syndrome. The news came as a shock to Alicia, who had a healthy pregnancy, including prenatal testing that revealed no abnormalities.

Divided by Distance

Following her recovery, Ella was moved to Blythedale Children’s Hospital for rehabilitation, where she stayed for the first critical months of her life.

Every day, Alicia and Tom made the long commute from their home in Connecticut to New York, determined to be by their daughter’s side. As they clocked countless miles, they also faced a steep learning curve, immersing themselves in ventilator and feeding-tube training to prepare for the day they could finally bring Ella home and reunite the family under one roof.

Heartfelt Homecoming

When she was discharged at five months old, PromptCare stepped in for Ella’s transition home. Andrei Mihai, RRT, oversaw her care and implemented every aspect of her therapy plan to ensure her safety outside the hospital environment, from ventilator management to respiratory monitoring. “Bringing home a new baby is madness, and this was extra chaos,” says Alicia. “But he was there every step of the way to make sure Ella had everything she needed. To have somebody help us on the first day with that level of professionalism and confidence is what every new parent hopes for.”

As Ella’s dedicated respiratory therapist, Andrei manages obstacles, orchestrates supplies, and serves as a reassuring voice. “If we ever have a question, he calls us right away. He gives encouragement to let us know we’re doing everything we need to do.”

Family, Full Circle

The family swiftly embraced their new routine at home, with their 3-year-old son, Colton, eagerly taking on a role in his sister’s care. “He loves waking up to see her every morning in her bassinet,” says Alicia. “Andrei set up a cart for her with all her supplies, and my husband decked it out with a nice power cord for everything. When we wake up, Colton helps bring Ella to the living room and says, ‘the sissy parade is coming, watch out.’ He adores her.”

As for Ella, mom and dad say she’s a superstar. Though she’s reaching all her developmental milestones and growing every day, her condition will necessitate lifelong management, including continuous monitoring of her respiratory status. “But she’s always smiling,” says Alicia. “We have nothing to complain about because we’re just so happy. She’s home.”

We’ll be here, taking care.

Life-enabling respiratory care requires expertise and consistency. A trusted, familiar face who takes those extra steps.

Ensuring efficient hospital-to-home transitions. Personally delivering equipment and training caregivers. Being there with you. It’s all in a day’s work.

800-776-6782

October 30, 2024