Chesterfield | Services: Hospital Medicine
The Case for Coordinated Care
Every three to five weeks for the last three years, 9-year-old Morgan Russell, her parents and older sister, Maddie, have kicked off the weekend with snacks, crafts and movies. But instead of gathering at the family’s Midlothian home, the Friday night activities occur on the inpatient unit at Children’s Hospital of Richmond at VCU’s (CHoR) MCV Campus while Morgan undergoes an 18-20-hour medication infusion to help her body fight juvenile dermatomyositis (JDM), an autoimmune disease with no known cause or cure.
Just before Morgan’s third birthday, she saw a dermatologist for a skin rash “that was getting worse and worse,” said her mom, Carla. Although tests showed the rash was not lupus, Morgan was referred to pediatric rheumatologist Harry L. Gewanter, MD, FAAP, FACR, who diagnosed the toddler with JDM. The rare condition, which affects approximately two to four children in a million in the United States, causes the immune system to attack previously healthy tissue, leading to a range of long-term, and often life-threatening, medical problems including muscle pain and weakness, skin and tissue damage, and a weakened immune system. Although there is no cure for JDM, an intense regimen of medications including steroids and chemotherapy can help manage symptoms.
Two years after her diagnosis, Morgan’s muscle strength deteriorated enough that she occasionally needed a wheelchair when she was too exhausted to walk, and she began regular IVIG medication infusions to reduce her symptoms. (IVIG is a blood-derived product that contains anti-bodies, which slow down JDM’s inflammatory process.) She was able to undergo the initial six-hour infusions at home but often became sick with migraine headaches and one day went into anaphylactic shock, sending her to the emergency room. By her seventh birthday, Morgan’s aggressive treatment expanded to include weekly chemotherapy shots and 18-20-hour infusions every three weeks. Because of the lengthy infusion time and increased risk of side effects, Morgan began receiving her infusions as an inpatient at CHoR, where her care is managed by Clifton C. Lee, MD, FAAP, SFHM, Associate Professor and Chief, Division of Hospital Medicine. Dr. Lee is one of CHoR’s five hospital medicine physicians whose sole responsibility is caring for inpatients and coordinating care with hospital specialists and community physicians.
“Before we met Dr. Lee, it seemed like every time Morgan was admitted, I wasn’t sure what I should be doing,” said Carla about the paperwork, arrival time and medication protocol for her daughter. “Dr. Lee adopted us and now coordinates all of Morgan’s admissions.”
Those admissions total more than 40, and last year Dr. Lee helped the Russells celebrate Morgan’s 75th infusion. Because rheumatologists don’t typically provide inpatient care, Dr. Lee consults with Dr. Gewanter while serving as the primary contact for Morgan’s hospital care. His knowledge of Morgan’s condition ensures seamless, efficient care and eliminates the need for Carla to continuously review Morgan’s history with new physicians, especially if she has setbacks or gets sick.
“Because I know Morgan’s history well enough, I can facilitate necessary tests and specialist visits,” said Dr. Lee. “I also get to know her as a person and not just a patient.”
An animal-lover, Morgan has two Maltese dogs and loves visiting with the therapy dogs when she’s at CHoR. She likes reading, Skyping with friends and doing gymnastics, although she tires easily and has had multiple sprains and bone fractures in the last few years. Because JDM also causes sun sensitivity, she has to use sunscreen, even in the winter, and wear a hat and protective clothing during the summer.
“Dr. Gewanter says Morgan should live life as normal as she can so we try to do that,” said Carla, who promotes “everything in moderation.”
Despite having to spend a Friday night in the hospital every month, Morgan said she likes Dr. Lee and his sense of humor. The outgoing fourth grader has many favorite nurses and has developed friendships with some of the patients she’s met over the years. She said she makes the most of her hospital stays by going outside to the seventh floor playground, spending time with family and friends, and enjoying activities in Child Life.
“Dr. Lee is like family to us,” Carla said. “I don’t know what I’d do without him.”