Meet Emily R.
Diagnosis: Cystic fibrosis, short bowel syndrome (SBS), microcolon, esophageal reflux
Services used: Infusion nursing and pharmacy, specialized nutrition
Getting Emily enough nutrition to grow and develop as she should was a constant challenge. To further complicate Emily’s situation, she needed to be weaned off parenteral nutrition (PN) before it caused damage to her liver.
Partnering with health care professionals, the PHS nutrition team worked with her gastroenterologist to adjust PN and enteral feedings. The PHS clinical social worker helped keep lines of communication open among physicians, family, and caregivers, providing a team approach to care.
Today, Emily lives much like any child. With the use of backpacks for her tube feedings, 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, Emily's mom