“We’re finally able to bring our child home.”
–Tyffany and James Rhodes, Parents
Late in her pregnancy, Tyffany Rhodes was diagnosed with preeclampsia. Tyffany’s blood pressure was very high. It was the 4th of July weekend, and before she could turn in her test results and get an official diagnosis, she went into labor.
James, Jr. was born early at 35 weeks and 4 pounds, 5 ounces. Doctors believed he went without oxygen for a period of time, which may have caused damage to his brain. Because of the trauma, he doesn’t swallow correctly. He acquired an infection and spent three months at Johns Hopkins Hospital, where doctors performed a tracheostomy and gastrostomy.
Mt. Washington Pediatric Hospital (MWPH) was the next step before James, Jr. could go home.
The Pediatric Complex Care Program (PCCP) at MWPH transitions infants to young adults with chronic or complex medical illnesses to home. Children who benefit from referral to PCCP often have respiratory or breathing difficulties, severe heart diseases, feeding issues, and other complex conditions of the heart, lungs, or intestine.
The interdisciplinary team of pediatricians, case managers, child life specialists, nurses, psychologists, social workers, and more assist children in becoming medically ready for life at home. They also give families the knowledge and skills to meet their child’s complex care needs.
“It’s not unusual by the time we admit patients to PCCP that they had been at one, two, or three other hospitals, and we find that parents just want to go home,” says Ajoke Ajayi-Akintade, MD, FAAP, neurodevelopmental pediatrician. “But, we tell them we are the bridge to home.”
While at previous hospitals, the focus was getting the child to live, but at MWPH, “our focus is for them to heal, to continue to grow, to attain their developmental abilities, and to prepare them for life outside of the hospital,” says Dr. Ajayi-Akintade.
Like all families who come to MWPH, from the time James, Jr. was admitted, the Rhodes family was an important part of the care team. During admission, families meet with the interdisciplinary team to assess their child’s goals. Through discharge planning, they work with a dedicated case manager to get the support they need to care for their children at home. This may include filling medications or connecting families with resources like in-home nursing or medical equipment.
Tyffany and James, Sr. also learned a lot through simulation lab training. They worked with staff to learn how to hook up their son’s gastrostomy tube (G-tube), how to feed him, how to change his tracheostomy tube (trach), and what to do in the event of an emergency or if he stops breathing.
“The simulation lab gets parents comfortable caring for their children at home,” says Dr. Ajayi-Akintade. “They run through all kinds of scenarios that might happen. The feedback we’ve had from families is that it’s really, really helpful and essential so when things happen at home, they confidently know what to do.”
Today, James, Jr. is living a happy life at home with his parents. Before, James, Jr. didn’t have a lot of movement because his muscles were very tight. Staff worked with him to extend his muscles, open his hands, and reach out and play with toys. His weight has increased as well as his muscle control and movement. He’s less fussy, and he plays with toys and acknowledges people around him now. And, his parents feel comfortable and confident caring for his complex needs.
“Going home, there were different emotions,” says James, Sr. “On the one hand, you’re extremely happy. I’m finally able to bring my child home. I’ll be able to start moving forward. But, on the other hand, if anything goes wrong, it’s just us. So, you’re nervous.”
“They did everything in their power at MWPH to make sure that you know what to do,” he adds. “Now, it’s my responsibility to actually do it right. You get a little nervous about whether you did everything, but they do such a good job of training you that it doesn’t take long after you get home that you’re like, ‘Oh yeah, I can do this. I’ve been doing it for months.’”
To schedule an appointment or learn more about our programs, call us at 410-578-8600 (main campus) or 410-578-2600 (inpatient).