Father and son Ryan and Alex Morales know what it’s like to spend days—even weeks in the hospital. The two have been patients at Children’s National Hospital for more than 10 years. Their stories are connected by Children’s National physicians who have been treating them since 2005 and continue to see them improve and grow in more ways than one.
Ryan Morales is an 11-year-old boy who first came to Children’s National in 2005 when he was diagnosed with cystic fibrosis, a hereditary disorder affecting the exocrine glands. Cystic fibrosis disrupts the normal function of epithelial cells, causing the production of abnormally thick mucus. This mucus leads to the blockage of the pancreas, lungs, and intestines, often resulting in respiratory infections.
For 11 years, Ryan has come to Children’s to see pulmonologist Hollis Chaney, M.D., who treats him during regular visits every two to three months. The nursing staff also looked after Ryan closely during his frequent hospitalizations. Occasionally, Ryan experiences digestive complications that involve a gastroenterologist as well as issues involving his ears, nose, and throat, which require an otolaryngologist.
“Most cystic fibrosis hospitalizations are longer than two weeks, and ours are just about four or five days, because we know how to get done what we need to get done,” said Ryan’s mom, Regina, who has been a nurse for more than 19 years treating adult patients. It was different for her when the patient was her son, but she says the family quickly learned how to handle Ryan’s condition and prepare for the inevitable hospitalizations.
Making the hospital environment comfortable for Ryan was a huge priority for the Morales family. They found ways to make his hospital room as familiar and comfortable as possible – they even brought his comforter from his bed at home. Once their routine had become second nature, the family decided to help other families feel comfortable during their hospital stays by putting together “Parent Packs” for other parents.
“When parents are admitted, they don’t necessarily know what’s going on and might not even have basic needs, like toothbrushes,” said Regina. The parent packs include toiletries and other items that they may not have packed for themselves prior to a sudden hospitalization. They provide comfort to families and are one less thing for them to think about in a potentially hectic time.
Ryan’s Dad, Alex, Becomes a Children’s National Patient
Seven years after Ryan was admitted, his dad, Alex, was diagnosed with a heart condition called hypotrophic cardiomyopathy (HCM), which occurs when the heart muscles are too thick to correctly pump blood.
Alex eventually entered the care of a Washington Hospital Center cardiologist who discovered that he had an anomalous coronary artery, or a heart defect related to an improper location of the coronary artery. His physician worked with the Washington Adult Congenital Heart (WACH) Program and teamed up with Richard Jonas, M.D., Chief of Cardiac Surgery and Co-Director of the Children’s National Heart Institute, and his team to coordinate corrective heart surgery.
Alex had one condition before agreeing to surgery: he wanted to recover in time to take Ryan to Disneyland for a trip he had planned for a few weeks after the surgery.
After surgery, Alex was in the hospital for four days, and just 10 weeks later, the Morales family took their trip to Disneyland, just like Alex had wished. This month, Alex and his family are celebrating the three-year anniversary of his successful heart surgery.
Ryan attended the 2015 Children’s National Annual Meeting in December, taking a seat right next our President and CEO, Kurt Newman, M.D., to help him present the latest news about Children’s National to its boards, employees and friends.