No place like home!
Six long months after Kieesha had changed Dawnda’s and John’s world, her medical needs were many. She was on oxygen, using a ventilator, had a tracheostomy and a feeding tube, and needed 24-hour nursing support. But, this tiny little girl was still charming everyone with her big smile, and thanks to the Children’s Mercy Infant Tracheostomy and Home Ventilator Program, she was able to finally go home.
Like Kieesha, most babies on the ventilator are discharged from the hospital to home around 6 to 7 months of age. At home, the Infant Tracheostomy and Home Ventilator Program gives patients and their families the opportunity to have a sense of normalcy and thrive in an environment outside the hospital critical care units.
Through the clinic, Kieesha was still able to receive complex medical care and had access to an on-call physician 24/7, as well as the multidisciplinary care team and the support of a local private duty nurse in the home.
She also was followed in the program’s multidisciplinary clinic where all members of the team were available to see her, including neonatology, intensivists, otolaryngology, pulmonology, gastroenterology, physical therapy, occupational therapy, social work and a dietitian.
“When Kieesha went home, she had both a tracheostomy and was on a home ventilator,” Dr. Manimtim said. “Most kids are able to have their trach taken out between 3 and 4 years of age. Kieesha has been off the ventilator for years and her lungs have improved. She graduated from the clinic when she was about 4 ½ years old, but because of her paralyzed vocal cord and narrowing of her airway opening, she still has the trach and her voice is very soft.”
Now 9 years old and in the third grade, Kieesha sees her primary care provider, along with ENT, dermatology and pulmonary subspecialists at Children’s Mercy who manage her medical problems. She takes medications to help with severe allergies and asthma, but all things considered, she’s doing well.
“Kieesha’s case is very complex medically and socially, but she is flourishing,” Dr. Manimtim said.
And so are her three siblings, who were all patients in the Children’s Mercy NICU; two born at 25 weeks’ gestation and one born at 32 weeks’ gestation.
“I commend Dawnda and John for taking great care of not just Kieesha, but her siblings as well,” Dr. Manimtim said.
“Dawnda is good about staying in touch with me, and one Christmas, she sent me a picture of all the kids together, happy and smiling. I tell you, that is one of the most beautiful pictures I have ever seen.”