Meet Our Patients
Josie:
Poor Prognosis | Promising Potential at Home
Grim prognosis turns around
It took a month of medical visits to determine infant Josie's complicated diagnosis, which includes:
- Dermatomyositis, a muscle disease with inflammation, rashes, and calcinosis
- Gastrostomy
- Chronic sinusitis
One step forward, two back
One and one-half years after her initial diagnosis, Josie's conditions flared up and she required surgery. Before the procedure, PHS arranged for Josie to spend a long weekend at home. PHS trained her parents on the food pump, infusion therapy and providing other care. That time at home was especially valuable, since she was then hospitalized for seven months, in and out of ICU.
Home at last
PHS helped Josie come and stay home, providing more training for her parents and, later, accompanying her to school to finish semimonthly infusions. PHS helped ease the transition to a port, rather than continuing with peripheral IV sites. Since putting in the port, Josie has remained infection free. PHS also:
- Earned Josie's trust
- Built Josie's parents confidence as caregivers
- Provided timely medication blending and deliveries early on
Bouncing back
There is no cure for dermatomyositis. About one-third of kids with Josie's medical challenges go into remission, yet Josie is still battling. She is a feisty, active first-grader who is stable and infection free. She keeps up with her busy siblings and most days, her PHS caregivers find her on the trampoline, bouncing back again and again.
Born:
2002
Diagnosis:
Gastrostomy, chronic sinusitis, dermatomyositis
Challenge:
Josie's initial prognosis was very poor and she continues to battle, mostly her dermatomyositis
Solution:
PHS partners with hospital and clinic health care professionals, plus Josie's parents, to ensure her food pump and IVIG, steroid and methotrexate infusion medications are stable, safe and healthy
Result:
Consistent care and caregiver training helps Josie thrive at home. She loves school, playing with three older siblings, and can usually be found on the trampoline
"Having a sick child is not the end of the world. Josie remains right here in her comfort area while getting the medications and care she needs. PHS also trained us to care for her — all so she can stay at home, right where she belongs." -Jay Adams, parent
