Changing Colors: The Blog of Spectrum Pediatrics

Posts Tagged ‘coaching’

July 3, 2018

Tube-Free Superstar: Meet Lucas

Lucas was born full term and diagnosed with an esophageal atresia and a tracheoesophageal fistula at birth. Lucas underwent surgery following birth for repairs and remained in the NICU for 2 weeks. While in the NICU, Lucas began eating by mouth with some success and he was discharged from the hospital. At home, Lucas began to refuse bottles and his mother described feedings as extremely difficult and stressful. He underwent multiple tests to attempt to find a reason behind the increased vomiting, reflux, and food refusal. When Lucas was 4 months old, he was hospitalized due to dehydration and food refusal. At this time, an NG tube was placed for primary nutrition. His parents report that following the NG tube placement, Lucas did gain weight, although any interest in oral intake decreased. Lucas’ parents reported that following the NG tube placement, Lucas continued to refuse food, despite decreased pressure.

Eating CookieFollowing multiple failed attempts to increase oral feedings via regular feeding therapy, Lucas’ family decided to do a supported tube-wean after learning about the program through their doctor. Lucas’ journey began at 8 months old with the team at Spectrum Pediatrics in his natural home environment in New York. Lucas’ GI doctor worked closely with his therapist throughout his tube weaning journey. During the first day of intensive treatment, Lucas began to show interest in both solid foods and purees. He immediately showed his independent side and started to feed himself! Lucas enjoyed crackers, cheese puffs, and anything his parents were eating. Lucas was so excited to start his tube-free journey that he decided to pull his NG tube out on the first day. His parents and therapists felt confident in Lucas’ overall interest in food and increased oral intake.

Over the course of the next few days, Lucas started to increase his oral intake each day. He quickly learned to love to eat oats for breakfast and wonton soup for dinner! He loved to munch on cookies, puffs, and anything dipped in ricotta cheese. Within the first 4 days of treatment, Lucas learned to love to drink milk from his cup and water or apple juice from his straw cup. He learned how to hold and drink from his straw cup all by himself. It was clear tat Lucas was slowly starting to trust food and build a relationship with his caregiver’s during mealtimes. He began to show signs of hunger and thirst by crying or reaching for food or his cup. He worked very hard to feed himself, drink through different cups, and swallow purees, liquids, and soft solids!

During the follow up period, Lucas was happy during mealtimes with his family. His parents quickly started to recognize his clear cues to request more food or signal he was all done. He learned to eat various foods and became a more competent and confident eater. Lucas loves going out to restaurants with his family, especially when he gets to go to Panera Bread for his favorite, mac and cheese! Throughout the first month of follow up, Lucas’ parents observed that he was starting to eat more consistent meals and have fun during mealtimes! Lucas is continuing to show his independent side, he is learning how to feed himself with a fork and spoon, as well as pick up small pieces from his tray.

We are so proud of Lucas and all the things he has accomplished! Congratulations to Lucas and his entire family for being a tube-free superstar!

Photos provided by Lucas’ family