Ashlyn - COMPLICATED SYNDROME | Home solutions

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About Ashlyn:

Born: 1997

Diagnosis:

CHARGE Syndrome, affecting sight, hearing, heart; mild development delay; bleeding disorder; bowel malrotation; immunosuppression

Challenge:

Helping Ashlyn gain and maintain healthy weight while keeping her infection-free

Solution:

Partnering with healthcare professionals, PHS transitioned Ashlyn to feedings with less risk of infection, along with 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 her toys-all at home."
- Michelle Curley, RN, CRNI

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 equipment setup

Ashlyn needed to gain weight and avoid infections. A port-a-cath, or central line, gave her 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. SQIG is administered in skin tissue rather than directly into the vein. SQIG therapy is relatively new to homecare.

Ashlyn has been infection-free since she's been on SQIG.

Download Ashlyn's full case study PDF (0.75 MB PDF)