It was during a visit to the local emergency department that Adriane and Timothy Deckard of Phenix City, Ala., learned their 12-year-old son Taylor wasn't struggling with asthma as they had been told for two years, but suffering from a very rare condition known as pulmonary arterial hypertension (PAH).
In December 2016, Taylor walked into the kitchen while getting ready for school complaining that his legs were "jiggling"; when he walked. They were swollen from his toes to his knees, said his mother, Adriane. The family had been worried about various symptoms Taylor had struggled with for quite some time, but his pediatrician had just told the family that he struggled with asthma and would eventually outgrow it.
However, Adriane felt like it was more that day, so she took him to the emergency department in Fort Benning, Ga. While doctors were checking him out, they discovered he had a heart murmur-- something Adriane had never been told before
Taylor began to decline quickly, so he was life-flighted to Children's Healthcare of Atlanta. "He was in complete heart failure," Adriane said. "There was no blood in the left ventricle of his heart and he was going really fast."
Taylor was admitted in critical condition and shortly thereafter diagnosed with PAH, which is when the blood pressure in the lungs is too high. Adriane said the condition is quite rare and there are very few cases of it affecting children. "They weren't able to tell us much, but they were awesome," Adriane said about the Children's team. "The team was positive and kept us informed, but they didn't give us any false hope about his condition either."
It took about a week for Taylor to stabilize and he remained in the Cardiac Intensive Care Unit (CICU) at Children's for two months while doctors figured out the best treatment plan for him. At that time, there were only three types of medicines that specifically treat PAH and doctors had to test each one on Taylor. "They had trouble with him experiencing side effects to the medicines," Adriane recalled. "He would have an arrhythmia, start vomiting, get really bad migraines or have extreme bone pain."
But, the team was able to figure out which treatment is best for Taylor. One of his medicines is administered through an infusion that goes into his skin, similar to an insulin pump for diabetics. With this and other treatments, they were able to wean him off oxygen. He now only needs oxygen at night when he sleeps.
Taylor returns to Children's every three months for check-ups, an echocardiogram and a walking test. Other than that, his family is able to manage his condition at home, and the Children's team is always just a phone call away. "We appreciate them all so much," Adriane said. "The nurse practitioner team calls and checks in on him every week."
Since PAH is a progressive condition and there is no cure for it, Adriane said her family continues to just take it one day at a time. However, Taylor remains tough and loves playing with his Nerf guns and video games, reading "Harry Potter" novels and spending time with his brothers and their family's dog.