A Family Affair
“It was the hardest thing I’ve ever had to do,” said Mary Beth of bringing her son, Montana, to Children’s Hospital of Richmond’s Transitional Care Unit (TCU) in February 2008.
“It took me a while to get used to the idea of having him elsewhere because I wanted him at home” with his twin brother, Micah, and older sister, Victoria.
Born six weeks early, Montana was a small but seemingly healthy newborn. But four days after his March 2003 birth, Montana developed an e-coli infection in his large intestine causing swelling around his brain, his organs to shut down and his bowel to perforate. The infection, which had no cause or cure, kept Montana in the newborn intensive care unit for five months and required three surgeries to eventually remove most of his large intestine.”
When Montana came home in August 2003, he needed a special formula but was able to drink from a bottle. Even with a daily regimen of medication and numerous urinary tract infections, Mary Beth was thrilled to have him home and take the first photographs of her boys together.
“I had all my babies under one roof,” recalled Mary Beth. “I wanted the chaos of taking care of twins, and I had it.”
Before he turned two, Montana, who was eventually diagnosed with cerebral palsy, microcephaly, developmental delay and seizure disorder, developed feeding issues.
What he did eat, he threw up, and he stopped gaining weight. Because he was already receiving physical and occupational therapy and working with Children’s Hospital of Richmond’s Assistive Technology therapists, Montana was referred to Children’s Feeding Program.
In spite of the feeding therapists’ best efforts, Montana didn’t progress and received a gastrostomy tube for feedings. In the fall of 2005 he started special education classes at a Henrico County elementary school and continued regular appointments with six medical specialists including Eugenio Monasterio MD, FAAPMR, Director of Physical Medicine and Rehabilitation.
About this time, Mary Beth and her husband, Steven, divorced, making the care of three children including one with special needs challenging for the single parents. Dr. Monasterio suggested Mary Beth consider the TCU to provide the nursing care that was becoming more difficult as Montana grew and became too heavy for her to lift.
Open since 1999, the TCU offers round-the-clock skilled nursing care for children from birth to age 21.
First opened with 12 beds, the TCU expanded to 23 beds in 2002 and 47 beds last fall. Care is focused on the physical, emotional, psychological and spiritual needs of each child and his or her family.
Hospital Chaplain Cathie Stivers, PhD, M.Div., believes in the importance of involving the entire family in a child’s care.
“We want to provide family-centered, child-focused care and acknowledge parents as partners in that care, she said.”
Cathie works closely with all families, meeting with them when they first come to the TCU, planning family dinners and family days and publishing a TCU newsletter six times a year.
Family dinners are held twice a month and offer informal opportunities for families to meet and support one another. More structured family days are scheduled five or six times a year, typically on a weekend, and often involve an educational component for parents plus a fun activity like family photo day, holiday events and outdoor celebrations. Cathie is also always available for individual counseling and pastoral support.
“My goal is hospitality,” said Cathie, “and creating opportunities for families to be there with their children.”
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