Emily RR - POOR PROGNOSIS | Promising Future

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About Emily:

Born: 2007

Diagnosis:

Cystic Fibrosis, short bowel syndrome (SBS), microcolon, esophageal reflux

Challenge:

Getting Emily to gain weight and off TPN before it damages her liver

Solution:

Partnering with healthcare professionals, PHS nutrition support team worked with her pediatric gastroenterologist to adjust TPN and enteral feedings; PHS medical social workers helped keep lines of communication open between physicians, family and caregivers, providing a team approach to care

Result:

Emily lives much like any toddler, and with the use of backpacks for her tube feedings and TPN, she runs around the house and plays with her little sister

"I've got a happy child and that's the most important thing. PHS has trained me to be able to take care of her, and thanks to them, we can be here today."
- Edith Rios Rodriguez, Emily's mom and PHS client

Multiple challenges

From the time she was born, Emily has faced several life-threatening challenges: Cystic Fibrosis, short bowel syndrome, an abnormally small colon, and esophageal reflux. Getting enough nutrition to grow and develop as she should is a constant challenge. Doctors sent Emily home with a poor prognosis.

Making weight—a team solution

Working as a team, PHS staff, physicians and Emily's family—especially mom, Edith—have helped her achieve a quality of life that is far better than expected. Emily has even starting eating foods orally in addition to the nutritional formulas she gets through g-tube and TPN feedings, which are carried in two backpacks she wears at all times. "She's just like everybody else," says PHS nurse Doreen. "She plays outside, goes to the park and on family outings. She's just got a few extra things to carry."

Happy at home

Edith has been thoroughly trained by PHS to care for Emily at home and PHS clinicians make weekly visits to do exams and draw labs, and then work with a pediatric gastroenterologist to adjust feedings as necessary. The agency also functions as mom’s 24/7 backup whenever there is a problem or a need. A hospital room is no place for a child, says Edith. "Being at home gives her a chance to run and play and go outside, and just be happy. Thanks to PHS, we are still here."

Download Emily's full case study PDF (1.0 MB PDF)