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The Nutrition Support Team Drives Julian’s Journey to TPN Free

While it may be hard to believe, a full term newborn baby has over 200 cm (or 80 inches) of small intestine – more than four times a baby’s average birth height of 20 inches.

When PHS patient Julian was diagnosed with gastroschisis and a perforated bowel at 7 days old, he had to have most of it removed – leaving him with only 27 cm of small intestine. Julian would spend the first five months of his life in the hospital before transitioning home to receive care from a team of caregivers, including the nutrition support team at Pediatric Home Service.

Bringing enteral feeding home

Julian spends time in the hospital prior to coming home to receive careAfter one month in the NICU and another four months in the ICC,  Julian’s parents discussed the possibility of receiving care at home with his doctor as he was predominantly there to advance his enteral and TPN feedings. PHS soon came to the hospital to train caregivers on TPN and enteral pumps, and anything else related to Julian’s care.

“They trained all of our home care nurses from another company,” added Kelly, Julian’s mom. “When we would get a new nurse, they would go to PHS to be trained on how to care for him.”

Progress takes a team

PHS knows that patients who require TPN infusion therapy benefit from multidisciplinary provider perspectives, which is why a nutrition support team (NST) was created to give this population access to the most advanced and comprehensive care. This team, which is comprised of infusion nurses, dietitians, pharmacists, physicians, and home care nurses if applicable, meets weekly to discuss the status of each patient on TPN and collaborate on their care plans. Through this process, the patient is supported by multiple perspectives to ensure all angles of nutrition and health are being considered.

Julian enjoys some sunshine outside at home“The pharmacists know Julian well because they provide TPN to him each week, and I talk to Kelly on the phone every Tuesday morning” said Kayla Skog, Julian’s dietitian at PHS. “NST meetings are a collaborative event where the pharmacists can weigh in if I have a question about a lab value or want to discuss lab results, or his physician can be involved in the conversation to make decisions jointly. We can all rely on one another’s expertise and opinion.”

Through the weekly calls with Kelly (or more often, if needed), Kayla is able to get his most up to date weight, food and beverage input and output, and overall health prior to NST meetings to relay the most up to date data. And the success of this team is evident in Julian’s success since starting service with PHS – after coming home on just 3mL/hour of enteral feedings at 5 months old and supplementing the rest of his nutritional needs with TPN, Julian now receives 68 mL/hour and has decreased his TPN intake from 7 days a week to 4.

“I think the doctors we work with appreciate it too because they know that some of their highest needs kiddos have a whole other team that’s really watching them and setting them up for success. It’s reassurance for them as well,” Kayla added.

 A major milestone

As Julian got older and stronger, his entire team monitored progress and changed his care plan accordingly with the goal of continuing to decrease TPN needs, looking ahead to a time when he may not need it at all – and we are thrilled to share that the time has come, and Julian is now free of all TPN administrations and has had his line removed. 

Despite his medical needs, Julian is a happy three year old who loves playing outsideAnd despite all of these medical needs, at the heart of Julian is simply a happy child who loves trucks and taking care of the family’s animals.

“You would think with everything he’s gone through that he would be struggling in some ways,” said Kelly. “But he’s not – he’s right there with his peers, and it’s just impressive to see how much he’s been able to manage needing so much medical care at such a young age.”

These days, Julian’s top priority has nothing to do with his health- he has his eyes set on a side by side ATV.

“He is really an adventurer,” said Kelly.

Julian’s PHS team successfully worked to support his adventures for years to come – TPN free. 


Originally published: August 18, 2017