Helping families cope

Dietician Pepper Wilson
When Jeremy was hospitalized for placement of a permanent feeding tube, registered dietician Pepper Wilson calibrated the quantity of food and frequency of feedings the painfully thin 15-year-old could comfortably tolerate.

 

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With all she had been through with her chronically ill son, Jeremy Blake’s mother thought she would do OK once he left Emory Johns Creek Hospital (EJCH) with a permanent feeding tube in his stomach.

It seemed so straightforward when registered dietician Pepper Wilson and her team had led her and Jeremy through the process. Now, alone at home, Mrs. Blake felt panicked. What if she put the liquids in wrong? What if the tube became clogged or infected?

Jeremy, 15, was being followed by a number of community specialists for the same progressive neuromuscular disease that already had taken his uncle. But when his swallowing problems suddenly worsened, they agreed his mom should rush him to EJCH’s emergency room. Jeremy was diagnosed with aspirational pneumonia. Because the muscles in his throat were so weak, he was inhaling contents of his stomach into his lungs.

Gastroenterologist Girish Pore performed a percutaneous endoscopic gastronomy, running a permanent tube through the boy’s abdominal walls so that food could be poured directly into the stomach.

As Wilson calibrated the quantity of food and frequency of feedings the boy could tolerate, her first goal was to keep him as healthy as possible. But she and his doctors also wanted to give him as normal a life as possible. That meant teaching Jeremy and his parents how to use and flush the tube wherever he was. It wasn’t as easy as it looked, said his mother.

Up to now, Medicaid had paid for everything: Jeremy’s earlier care in the community, his nutritional support, and his hospitalization and surgery. But when it came to finding a home health agency to help the Blakes, social worker Carole Freeman found one closed door after another. Agencies that took Medicaid were licensed only to work with patients 18 or older. Agencies licensed to work with youngsters like Jeremy would not take Medicaid. The hospital contracted to pay for enough home health nurse visits for the family to feel comfortable with use of the feeding tube.

The money would come from a hospital fund called HUGS (helping the underserved gain support), established with gifts from Emory Healthcare employees and friends and from Johns Creek Presbyterian Church.

It took only three sessions with the home health nurses for Jeremy and his mother to feel confident in managing the feeding tube. Now Jeremy can look forward to a long-awaited fishing trip with his grandfather.

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