Patient Success Story: Carlyn

Carlyn was 18-months-old when I walked into her home for the first time. She looked at me with distrust while she played with small pieces of scrambled eggs. When I looked at those chubby cheeks and she gave me the serious look, I knew that I had a long way to go but never expected to learn so much about determination and trust. Carlyn was born on January 14th, at thirty-seven weeks with a jejunal atresia and christmas tree deformity. She underwent a total of five surgical procedures throughout her first eight months of life, requiring a prolonged hospital stay due to intestinal infections, multiple obstructions to severe liver damage (caused by TPN nutrition and high dose lipid use). Oral feeds were started and stopped, increased and decreased until she had an NG tube and finally a G-tube was placed. The last surgery resulted in 15cm of intestines being removed. A week after this last surgery, feeds were started. Carlyn was finally discharged on August 28th on twelve hours of TPN, Lipids, IV antibiotics, Protonix, and twenty-four hour g-tube feeds at a rate of 4ml/hr.

She was allowed to have 15ml bottles of breast milk or Elecare every 3-4 hours. Around her first birthday feeds were condensed into 1-2 hour increments and Carlyn started drinking more. By mid–April, tube feeds were completely stopped. Carlyn’s bilirubin was below 1. Carlyn received therapy from a different company since November of 2010 and mother’s main concern at the time was that Carlyn would gag/projectile vomit if anything with texture was placed in her mouth. The only calories she was really getting were from formula in a bottle. Carlyn was admitted by THERAPY 2000 in July of 2010 and she was already putting small pieces of soft consistencies in her mouth, then spitting and never swallowed them. She did not like to use her lips and she only drank from a bottle.

Carlyn was very smart and I knew I would have to develop her trust little by little considering the amount of pain she had been exposed to in the first year of life. And we did! Carlyn went from saying single words to four word phrases in a matter of five months: “Tiny” to “tiny piece”, “it’s too big”, and “I want more Mrs. Beatriz…please”. I was amazed by her capacity to learn from the cues that I was giving her and her willingness to try the presented foods despite her fears of previous pains. She imitated every single prompt or cue that I gave her and I followed her lead, allowing her tilt, awaiting for her permission to be fed. She learned to drink from a straw and a cup, and learned to use her lips appropriately to remove food from the spoon. She went from mashed potatoes and scrambled eggs to a wide variety of foods and consistencies (more than fifty, last time mom counted), and it amazed me that she could label all of those foods. But the truth is Carlyn could not have gotten there without her mother’s persistence and father‘s support. Ebby went right in with all the recommendations from the very first day and despite many tears and days of frustration she never gave up. Cleaning vomit, changing diapers (due to Carlyn’s intestinal condition), cooking high calorie foods, changing the consistency of the food, adding color, modifying the shape, let’s add more texture, let’s change the meal schedule–truly tireless. Thank you Ebby and Kevin for giving me the chance to work with Carlyn, to be part of her life and enjoy her marvelous progress.

–Beatriz Lourido, SLP