Transforming Moments

Tyrik’s Story

Living the Life: A Day on the TCU

For many children with special needs, their schedules revolve around feedings, medications, respiratory treatments and therapy. While that is the case for the 23 children and adolescents on the Transitional Care Unit at Children’s Hospital, their days are also filled with school, recreation, outings and more. One of these patients is nine-year-old Tyrik.

A healthy infant, at 18 months of age Tyrik began to have seizures and was soon diagnosed with a Progressive Neurodegenerative Disorder, a condition of unknown origin that leads to continued loss of function over time. In 2004 as Tyrik’s health continued to decline, his mom Shirley left her job as a Certified Nursing Aide to care for Tyrik full-time. She stayed home with him for nearly a year before talking with a case manager about getting him placed at Children’s Hospital. Tyrik has been a resident of the TCU for two years, a decision Shirley says “is the best thing I’ve ever done for Tyrik.”

The following story captures a day in Tyrik’s life.

7:00 a.m. – 8:30 a.m.

The inpatient unit is filled with sounds and energy as the children are woken up, dressed for school, given their medications and fed. Mary Terry, CNA, is the first to greet Tyrik this morning. She is the nursing aide assigned to four rooms on the unit, responsible for getting six children up and ready for their day. Mary checks Tyrik’s vital signs then gets him out of bed, dresses him, washes his face and brushes his teeth.

While Mary finishes her work, Sophia Entzminger, RRT, Respiratory Therapist, comes in, greeting Tyrik warmly and preparing for his morning breathing treatment. Because Tyrik is prone to respiratory infections, he receives these treatments twice a day. Sophia checks his heart rate, listens to his breath sounds then places an oxygen mask over his mouth as Tyrik breathes in Pulmicort, a medication that reduces inflammation, for 10 minutes.

After the breathing treatment is complete, Jessica McKenney, LPN, arrives to give Tyrik his medications and feeding before sending him off on his day. Entering the room with a big smile, Jessica tells Tyrik how handsome he looks. Jessica credits Tyrik’s appearance to Shirley, who washes and irons all of her son’s clothes, bringing them back to the hospital in bundles of outfits to wear each day.

While Jessica and the rest of the nursing staff are quick to compliment Shirley, she shares the same sentiments about them. “The staff spends so much time with Tyrik and they give him so much love,” explains Shirley. “I need to do my part and make it easier for them to do their part.”

“Even though she [Shirley] is not here, she’s here,” remarks Jessica.

8:30 a.m. – 9 a.m.

While many other children on the TCU begin their day in school at 8:30, Tyrik’s day begins at 9 a.m. with Recreation Therapy. This means he has time to head into the activity room on the unit and watch cartoons with several other children. Patsy Peart, CNA, uses this time for restorative nursing, doing range of motion exercises, stretching and gentle massage. She also checks the ankle-foot orthotics Tyrik wears while in his wheelchair to keep his muscles in natural positions. Singing as she works, Patsy’s efforts bring a big smile to Tyrik’s face.

9 a.m. – 10 a.m.

Assigned one-on-one attention, Recreation Therapy is a time when the children play games, listen to stories and go on community outings. Today Tyrik works with Catherine Tack, Therapy Tech, using toys that provide tactile stimulation. According to Vernita Easley, CTRS, Clinical Coordinator of Recreation Therapy, Tyrik will “just glow” when he is tickled by a vibrating toy. Vernita also said he responds well to toys and games that make noise and audio books like Harry Potter. While this day involved playing outside in the Kappa Delta playground and inside in the Recreation Therapy room, a typical day’s activities can also include attending the Soul Circus, getting a visit from a NASCAR driver or going to the Children’s Museum of Richmond.

“Part of our philosophy of care is the belief that every child has the right to enjoyment, pleasure and social opportunities,” explains Pat Anderson, RN, CRRN, Director of Inpatient Services. “We get them up and out of their beds and help them to be part of a community.”

10 a.m. – 12 p.m.

Tyrik leaves Recreation Therapy and heads down the hall to the Hospital Education Program. Part of the Richmond Public Schools, Tyrik spends four hours a day in school, working with Kristie Elrod, Hospital Teacher, Kathi Ice, Instructional Assistant, and his class of four other students.

With a big smile and a warm welcome, Kristie attaches a head switch, a device that speaks for him when he moves his head, to Tyrik’s wheelchair. Throughout class, Kristie programs the switch with a variety of messages including the Pledge of Allegiance and questions or comments related to the activities the children participate in. Today’s activities include a nature walk on the hospital grounds, music where Tyrik uses switches to tell Kristie whether he wants to hear “the planet song” or “the United States song” (he picks the planet song) and story time where another student selects “Holly Bloom’s Garden” as the book Kristie reads to the class. In science the students check in on their window garden, which is growing onions and radishes. Each student helps care for the garden, with Sean planting more seeds, Choice watering the garden and Tyrik measuring the plant growth. And with each student’s effort comes praise from the staff. “Good job,” “way to go,” and “nice work” are heard again and again.

12 p.m. – 1 p.m.

Tyrik returns to the unit where Mary repositions him in his wheelchair while Jessica checks his vital signs and starts his afternoon feeding.

1 p.m. – 3 p.m.

It’s back to Education to finish the school day. The afternoon is spent on group activities, with the students from Kristie’s class and fellow teacher Ruth Sanguliano’s class working together. One activity involves the students making a graph using the items collected earlier in the week on a nature walk, gluing dried berries, seed pods and dandelions to poster board to chart their collections. This project is one of many that will be submitted to the State Board of Education as part of the Virginia Alternate Assessment Program (VAAP), an alternative to Virginia’s Standards of Learning testing program. 

The school day ends as it began, with smiles and affection, as the teachers and instructional aides take their students back to the unit

3 p.m. – 6 p.m.

Tyrik returns to the unit for a rest. With a big grin on her face Jessica describes the curled up position he moves into and the smile that comes to his face when it is time to get in bed. “He loves his bed,” agrees Mary. In fact, everyone who works with Tyrik is quick to point out that time spent in his bed appears to be his favorite part of the day.

Tyrik naps for about two hours then is bathed and dressed again. He’ll spend the evening in the activity room with other patients or in Recreation Therapy

6 p.m. to 7:30 p.m.

On Tuesday and Thursday evenings Tyrik returns to Recreation Therapy for one-on-one interaction with one of Children’s Hospital’s volunteers. Evening Recreation Therapy sessions can mean story time, board or card games, or visits from special guests like Canine Connections, which brings therapy dogs to the hospital regularly to interact with the children.

According to Kevin Gravely, CTRS, Recreation Therapist, Tyrik really enjoys the tactile stimulation and activity of the evening Recreation Therapy sessions. “He starts smiling and laughing and just likes being around people and activity.” Kevin also reports that another favorite activity for Tyrik is getting his hair cut when “he just smiles the whole time.”

7:30 p.m.

Tyrik returns to the unit after a busy day, is given his medications and evening feeding and returned to the bed he loves. While in his room he is attached to a pulse oximeter to measure the oxygen saturation of his blood and checked on by nursing and respiratory staff regularly, another benefit of the TCU.

“Our patients are stable, but they do need medical care and they get that here, 24 hours a day, seven days a week from staff who really know them well enough to recognize when something isn’t right,” explains Pat. And for Shirley, that knowledge is a great comfort.

“Tyrik was home with us for seven years and was the focus of our family,” she explains, “but I know I did the right thing [placing him on the TCU]. I consider the people at Children’s Hospital my family and can’t thank them enough for giving Tyrik such excellent care.”

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