Because he has congenital Short Bowel Syndrome (SBS), 2-year-old Luke Middlebrooks is a regular outpatient in the Gastrointestinal Clinic at Children’s.

“He’s there pretty much every other week,” says his mom Krista. Luke requires intravenous nutrition in order to grow and thrive because his intestines “don’t work the way they need to,” Krista explains.

Caring for Luke on a day-to-day basis is very time-consuming, and Krista and her husband have come to depend on and deeply appreciate the help that they get from nurses at Children’s.

“The nurses provide us with really practical and absolutely critical information, education and strategies on how to advance Luke’s nutrition while avoiding infections in the central line that provides his total parenteral nutrition (TPN),” says Krista. “They bring so many years of expertise to the table and that is so valuable to us.”

Not that the physicians at Children’s aren’t wonderful. “The doctors are great, but it’s the nurses who regularly give us advice, and give us the security of knowing we can call or e-mail when we need to and say ‘hey, I have this concern, can you help?’” says Krista. In fact, when the area where Luke’s catheter enters his chest became inflamed and his parents worried that he was having an allergic reaction to the cleaning agent that they used near the site, Krista contacted an outpatient nurse who walked her through the problem. “Because of her I didn’t panic,” Krista says.

Like their inpatient counterparts, outpatient nurses at Children’s get to know the children they see regularly. “They provide parents of children with long-term conditions with the tools, education, helpful hints, advice, and moral support that enables you to care for your child,” Krista explains.

Luke will likely be an outpatient in the GI clinic for a long time. But, luckily, the nurses are invaluable to his parents.