Daniel Phillips, NP, examines 8-month-old John Bussard, a palliative care patient who has a rare genetic condition that can cause feeding and growth concerns among other things.
Palliative care nurse practitioner, Daniel Phillips, knows firsthand what it’s like to be a child with a chronic medical condition. Growing up with a neurological disorder called early-onset generalized torsion dystonia, he spent a lot of his childhood and adolescence in and out of hospitals. During his many hospitalizations he came to recognize and appreciate the kindness and compassion shown to him by the nurses, and it’s one of the reasons he chose to become one.
“I remember my nurses would take the time to talk to me – not just when I needed something from them – but also during downtime when I was doing homework or just watching TV,” he said. “I will always remember their faces, even if I don’t remember their names.”
Palliative care nursing
Now Daniel is one of the familiar faces on Akron Children’s hospital campuses (Akron and Mahoning Valley) caring for children in the palliative care program. He says he likes working with kids with complex and chronic illnesses because it allows him to form long-term relationships with his patients and their families – much like the relationships he had with his own nurses.
When Daniel left his position as a nurse practitioner in the NeuroDevelopmental Science Center (NDSC) in 2015, he spent 6 months training on the Akron campus with the staff of the Haslinger Family Pediatric Palliative Care Center learning all aspects of palliative care nursing. Although he is mainly tasked with growing the program on the Beeghly campus, Daniel takes call for both campuses 1 weeknight and 1 weekend per month.
Daniel gets John’s attention.
“Currently we follow about 150 active patients in the Mahoning Valley,” he said. “We do both inpatient and outpatient (office and home) consults, follow-ups, make calls to check on durable medical equipment/medical concerns.
Because Daniel is an NP, he works with many families via telephone to provide medical recommendations and prescribe medications and tests; in an attempt, to provide support in helping parents be able to keep their children at home vs. sending them to the hospital.
“As a team we coordinate care with other specialties, as well as, provide a supportive presence and assist in managing symptoms in patients with terminal illnesses and end of life,” he said. Moreover, bereavement support is provided; in addition to, perinatal consultation for mothers whose babies have been diagnosed in utero with concerning medical issues and uncertain prognosis.”
Registered Nurse Melanie Hall distracts John with a toy truck as Daniel checks on him.
Clinic appointments
Today Daniel is seeing 8-month-old John Bussard who has Cri du Chat, a rare genetic condition that can cause feeding and growth concerns among other things. John also has laryngomalacia and septo-optic dysplasia. He was recently hospitalized for 3 days for an upper respiratory infection.
His mom, Billie, came prepared with a notebook full of questions and a video of John – potentially having a seizure – recorded on her phone. As a mother of 3 other typically-developing boys ages 8, 6 and 2, Billie had a normal pregnancy with John and no indications she would have a child with complex medical needs. Although she’s a little sleep deprived from John’s feeding difficulties and reactive airways symptoms, Billie doesn’t miss a beat catching Daniel up.
Mom Billie shows Daniel a video of John possibly having a seizure.
“John is scheduled for ear tube surgery, a swallowing study, a 24-hour EEG to watch for seizures and a sleep study to check for apnea,” she says. “But my main concern today is John’s feeding.”
John has been in feeding therapy since July, but Billie struggles to get him to drink the prescribed 27 ounces of formula his pediatrician recommends, but notes he eagerly consumes baby food. Daniel assures her that John is gaining weight and that’s an encouraging sign. He asks Billie whether John is meeting his developmental milestones like sitting up and crawling. She explains that John relies heavily on his leg strength to push himself up because of low muscle tone in his upper body.
John enjoys a bottle from his grandmother Anne, as Billie describes his current behaviors to Daniel and Melanie.
“It’s just John’s way of doing things a little differently, but he gets there,” she says. “He doesn’t always take the time to learn it – he just does it.”
Coordinating care
In addition to gastroenterology and neurology, John sees a pulmonologist, endocrinologist, otolaryngologist and physical and occupational therapists. The dizzying number of appointments, tests and procedures would be a lot for someone with just 1 child, let alone 4. Billie’s mom, Anne, joins her for emotional support whenever her schedule allows.
Daniel spends 1.5 hours with Billie and Anne addressing all their questions and concerns. At one point Billie becomes emotional and questions her own motherly instincts when she can’t figure out whether something John does or doesn’t do is related to his Cri du Chat or just John being John. Daniel reassures her that no one knows John better than she does.
John sees specialists at 7 areas at Akron Children’s, which Daniel helps to coordinate.
“I feel bad because I give you all this information and tell you my concerns, but leave it up to you to figure out,” she says. “Like when John doesn’t want to take a bottle I don’t know if it’s because he’s tired, not hungry, congested or due to his condition.”
John has recently begun banging his head on his crib rails and Billie worries that he may not feel pain in the same way as other kids and could lead to injury.
“John just wants me to think a little bit harder to figure things out and that’s OK,” Daniel says suggesting she use a Styrofoam pool noodle as a crib rail protector.
Billie keeps John’s records organized by specialty in a vertical file she brings with her to all of his appointments.
Having worked in developmental pediatrics, Daniel recommends Billie seek out a consult with the team in the NDSC to make sure John’s development is appropriate for his diagnosis.
“This is why palliative care exists – to help our patients consider all the options available to them and help coordinate their care,” he says. “I have a passion for my work and enjoy being that extra layer of support and guidance for families.”
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