The story of Tayler
My name is Stephanie, I am writing this story on behalf of my son Tayler who just turned 8 years old, he’s been diagnosed with PCD for just shy of 2 years. Primary ciliary dyskinesia is where the cilia the hairlike structures that line our nose and lungs and sinuses dont work properly which means your body can’t clear mucous properly so it has to be cleared manually to prevent infections from harboring in the ears,sinuses and lungs.Tayler’s story started when he was born premature at 33wks, he was in NICU for 6.5 wks. His NICU journey consisted of lots of ups and downs, at only a few hours old he developed a harsh cough and needed to go on oxygen, his lungs continued to collapse therefore I couldn’t nurse him so he was fed via an oral gastric tube for 6 wks, he was tested for cystic fibrosis twice while in NICU and both times it was negative, no one could figure out why he had such a cough and with that lots of nasal and oral secretions, and his lungs continued to collapse,he eventually went on CPAP to prevent his lungs from collapsing and things got better for tayler, he was eventually able to nurse and his lungs maintained and we were discharged home with an unknown reason for his cough and nasal congestion. Up to his diagnosis he’s had his tonsils/adenoids removed at 1.5yrs old due to moderate obstructive sleep apnea, hes had 10 sets of ear tubes, 1 turbinate surgery all due to repetitive ear infections. For years no one knew why he was getting so many ear infections, why he has such a harsh productive cough and pneamonias. He was tested for CF another 2 times, again negative. It took a new otolaryngologist to suggest testing him for PCD, so we did lots of blood work and it had to be sent off to the united states, it took months to get the results back due to the beginning of covid pandemic. We now have the diagnosis, and tayler does a nebulizer 2xday, he does PEP therapy which is chest physio, he takes a prophylactic antibiotic and a nasal rinse daily with an antibiotic ointment to prevent sinus infections. He has had 1 hospital admission for a bronchoscopy and a course of IV antibiotics for pneamonia. We just found out he is now growing pseudomonas aurogonasa in his lungs and has to add an antibiotic nebulizer to his regime for 1 month in hopes to clear it out. Tayler is a very active boy who loves his sports and as of this year is now a full time goalie. He struggles with his PCD and just wants to be a normal boy and we do our best to make it as normal as possible for him. PCD is very under researched and they don’t have much knowledge on how to properly treat it and often will treat it the same as Cystic fibrosis, alot of things are covered for CF but not for PCD because its so rare. Its a daily struggle and will be for the rest of taylers life, we pray for more research to properly treat his PCD.