One blink for yes.
Of course, 4-year-old Amiya wants to watch Shrek when asked. She loves princesses and castles, as any of her therapists or nurses will tell you.
Amiya is non-verbal, just one of many symptoms of her spinal muscular atrophy (SMA), but that doesn’t stop her from loving her princess movies. “She’s very verbal with her eyes. It’s how we know what she wants,” Amiya’s mom, Kristina explains.
SMA affects the motor nerve cells in the spinal cord, removing the ability to speak, eat and even breathe. It is the No. 1 genetic cause of death in infants.
Amiya is beating the odds, but she requires in-home care, including respiratory therapy from the Johns Hopkins All Children’s Home Care Services
. Amiya has a tracheostomy and is on a Trilogy 100 ventilator, which her mother was carefully trained to use.
“It was scary dealing with that trach for the first time, but the therapists have been very helpful,” Kristina adds. In addition to offering and maintaining much of Amiya’s equipment, Johns Hopkins All Children’s Home Care provides a coordinated case-management approach and continuity of care for patients as they leave the hospital and transition to home care.
Amiya has oxygen for use if needed, a pulse oximeter to monitor her oxygen saturations and heart rate, suction and feeding pump. Several therapists visit monthly and are available as needed to work with Amiya, check equipment, provide assessments and offer education.
Her therapists have known her for much of her life and have grown very fond of Amiya. “She lets us know by her facial expressions that she recognizes us,” Melanie Norris, her respiratory therapist says. “We can tell when she’s happy or tired or sad. We like to give her lots of attention when we see her.”
Norris fully understands how much her family appreciates that Amiya can be cared for at home. Her mother has gone back to school and is earning her own degree in respiratory therapy because, just watching Amiya’s care and learning so much, she’s already practically an expert. And she understands from the perspective only a mother can have, how much this highly specialized care means to both mother and daughter. It has been lifesaving in Amiya’s case.
“We know how much her mom appreciates being able to have her at home with her, so it means a lot to us to be able to provide a service like this, even for many of our chronic patients,” adds Tina Gray, another one of Amiya’s respiratory therapists.
Johns Hopkins All Children’s Home Care meets the special medical needs of children at each stage of development from infants through teen years, serving multiple counties throughout the west coast. Staff is on call 24-hours a day by phone to assist the patient’s family and physicians as needed.
Recipients of the 2017 Joint Commission Three-year Gold Seal of Approval, the staff at Johns Hopkins All Children’s Home Care works closely with the family’s health insurance representatives to ensure the claims process proceeds smoothly, easing any burden on the family that they possibly can.
In addition to therapy and nursing services, Home Care also provides a pharmacy, durable medical equipment and case management. Services have recently expanded to include Manatee, Hillsborough, Polk, Highlands and Hardee counties, helping to keep families throughout the west coast of Florida together and out of the hospital as much as possible.