First things first
The first order of business for Amarissa was to have a nasogastrointestinal tube and an IV line placed to help supplement her nutrition.
“During the first two weeks we were there, the team used total parenteral nutrition (TPN) to get Amarissa healthy again,” Ashley said. TPN is a way of supplying the body’s nutritional needs, bypassing the digestive system via the veins.
As she began feeling better and regaining her strength, Amarissa ventured outside her hospital room. She enjoyed doing arts and crafts and going to the play room on 6 Henson, playing bingo and going to pet pals.
As she regained her strength, her medical team searched for answers and solutions to Amarissa’s severe constipation, and failure to thrive.
“While 25% of our outpatient GI referrals are for constipation, Amarissa’s symptoms were severe and required multiple tests to gain a better understanding of what was happening to her,” said Jennifer Colombo, MD, pediatric gastroenterologist and one of Amarissa’s physicians.
Amarissa’s GI manometry, or motility studies, which test the function of her GI tract (how the muscles and nerves interact) were normal. According to Dr. Colombo, it seems that she has hypersensation of the GI tract. Her bowels worked until waste reached her colon, then they seemed to stop.
“Testing showed Amarissa has all the right muscles and nerves, but her nerves sense and interpret normal movement of the GI tract as severely painful, making it difficult to move the digestive waste through her intestines,” Dr. Colombo explained.
To help her consistently have bowel movements, the GI team recommended Amarissa have an ileostomy, a cecostomy and a feeding tube.
An ileostomy is an opening in the belly wall where the end of the ileum, or the lowest part of the small intestine, exits the body. Intestinal waste passes out of the ileostomy and is collected in an artificial external pouching system adhered to the skin.
A cecostomy is a small plastic tube that goes straight from Amarissa’s skin into the beginning part of the large intestine or colon. This creates a direct opening to the intestines, allowing them to be cleaned out daily, or flushed.
A feeding tube was inserted into Amarrisa’s stomach through the abdomen and is used to supply nutrition when she has trouble eating.
After spending six weeks in Children’s Mercy, including her fourth birthday and Valentine’s Day, she was finally able to head home on Feb. 19, 2020.
Amarissa was now healthier than ever—having gained seven pounds during her hospital stay. “When we got home, she had outgrown all of her clothes and shoes,” Ashley said.