Meet Our Patients
Ashlyn:
Complicated Syndrome | Home Solutions
Once not growing, now going strong
Ashlyn was a very sick baby. Born with CHARGE Syndrome, a genetic pattern of birth defects that occurs in about one in every 10,000 births, she had a complex combination of complications:
- Hearing and vision loss
- Development delays
- Heart and respiratory problems
- Bleeding disorder
- Bowel malrotation
- Immune dysfunction
Unique IV infusion equipment setup
Ashlyn needed to gain weight and avoid infections. A port-a-cath, or central line, gave her intravenous immunoglobulin (IVIG) infusions. It also led to infections and irritated her stomach.
PHS's infection-free solution
PHS put her on total parenteral nutrition (TPN) with IV feedings. To ensure her IVIG didn't strip Ashlyn of nutrients, PHS would ramp up the TPN before and after IVIG treatments. If her central line became infected, PHS IV nurses started a peripheral IV for antibiotics.
Impressive results
PHS then transitioned Ashlyn to g-tube feedings and subcutaneous infusions (SQIG). Without a central line, her risk of infection dropped. Relatively new to home care, SQIG is administered in skin tissue rather than directly into the vein.
Born:
1997
Diagnosis:
CHARGE Syndrome, affecting sight, hearing, heart; mild development delay; bleeding disorder; bowl malrotation; immunosuppression
Challenge:
Helping Ashlyn gain weight and maintain healthy weight while keeping her infection free
Solution:
Partnering with health care professionals, PHS transitioned Ashlyn to feedings with less risk of infection, and provided training for all her caregivers
Result:
PHS helped keep Ashlyn home, and with her new feeding system, she's had no infections
"If kids like Ashlyn go to the hospital, they get sicker. They go in with one problem and wind up with others. PHS keeps kids like her at home. Ashlyn is stable and hasn't been hospitalized in more than a year. She does well nutritionally and keeps gaining weight. She uses sign language, snuggles her cat, greets nurses with hugs and plays with toys — all at home." -Michelle Curley, RN, CRNI
