We are proud to have served so many patients and made so many friends throughout our 25 years of care giving. Read some of their stories below.
Ashlyn is an 8-year-old born with CHARGE Syndrome. She is a delightful girl who is deaf, has a tracheotomy, a bleeding disorder and receives nutrition through a G-tube. At night and during naps Ashlyn is on a ventilator, and while awake, she's on humidified air. Her daily nursing care consists of continuous feedings, nebulizers two times a day, chest physical therapy (CPT) four times a day, medications and assessing her environment for obstacles and risk of injury due to her bleeding disorder. She has a port-a-cath implant through which she receives IVIG every 3 weeks, TPN for 7 days a month and Humate when she shows signs of bleeding. Due to her CHARGE Syndrome, Ashlyn is unable to regulate her body temperature requiring frequent checks of her temperature, especially when the environmental temperature is extremely hot or cold.
Ashlyn has learned to communicate through ASL. She recently received a cochlear implant and when it is on she enjoys hearing sounds and has become more verbal. Ashlyn also receives year-round home-bound schooling through the public school system where she lives.
Kevin is 20 years old. He has CHARGE Syndrome, is dependent on trach and vent and is considered legally blind and deaf. He lives with a big family and others with disabilities. He is learning sign language (hand over hand) to identify his wants and needs. He enjoys being outside, going for walks or riding behind in a bicycle carrier with a nurse. He loves to cook and taste all of his creations – sweets are his favorites.
Jovie is 2 years old. Universal brought her home from the hospital at 18 months of age. She was born with a diagnosis of Microvillus Inclusion Disease. She was unable to take anything orally and received hyperalimentation and lipids through a central line in order to get her weight up and provide her the nutrients she needed. In 2009, Jovie received a large and small bowel, liver and stomach transplant. She has done exceptionally well. Plans are that Jovie will remain in Pittsburgh for a few months and then return home. Jovie runs around the hospital making sure all of the other patients are taken care of when their monitors beep.
Andrew is a 6 year old male diagnosed with Charge Syndrome. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. Andrew has a tracheostomy and gastrostomy tube for feedings. He has had a cochlear implant due to hearing loss. Andrew now attends school approximately 3 hours a day 5 days a week.
Isabella, better known as Ella, is a 3 year old little girl who is a status post heart transplant & unknown muscular disorder patient of UPSI’s. Ella also suffered 2 strokes, bilaterally, when waiting for her new heart. Ella’s cares include: medication regimen with anti-rejection & cardiac medications/therapies to encourage her to utilize her body and gain strength/ and a GT feeding regimen. Ella’s nurse, Angela, works with Ella on a daily basis to speak with her voice and use sign language as an effective way to communicate with others around her. Ella lives at home with her parents and her oldest sister Maddi. Ella is now attending school for the first time; she is very social, and photogenic!
Jeremiah is our youngest patient, he is a 3 month old baby boy born with micrognathia, a small jaw with impedes on his airway, therefore effecting his breathing. Jeremiah also has a very small tongue, known as microglossia, which for the first 3 months no one could see or touch. Jeremiah has a trach & is on constant humidification throughout the day & night. Due to his small jaw, Jeremiah is not able to eat orally, so he receives his nutrition via his gastrostomy tube. His nurses monitor his trach/ administer his GT feedings & medications/provide trach & GT cares, as well as snuggle with him!
Alyvia is a 9 year old girl born with GoldenHar Syndrome, which includes chronic lung disease & tracheal stenosis. Alyvia has a trach, she is oxygen dependent, and receives her nutrition through her GT. Alvyia’s nurses provide clinical monitoring/trach cares/GT cares/feeding & medication administration. Alyvia enjoys going to school, she has a lot of friends, and loves to play with her sisters and kitten Khloe. Alyvia lives at home with her parents, her two older sisters Alexis & Asia, her kitten Khloe, her cat Cocoa, and dog Luna. Alyvia is studying hard to become a veterinarian because she loves to care for pets and knows a lot about the animal kingdom.
Noah is 3 years old and was born at 29 weeks gestation with a diagnosis of Subglottic stenosis and paralyzed vocal cords. He has a tracheostomy and requires oxygen at night. During the day he is on room air. Noah is currently going through different stages of the decannulation process to have his tracheostomy removed. Noah loves to run around the house and is usually always full of smiles.