Condition: Encephalitis, Subcranial Hemorrhage
City, State: Bend, OR
Club: Ponderosa Elementary School Sparrow Club Service Hours:
Date Adopted: 11/13/2013
LilyAna was born healthy and happy in April of 2012. At 9 months old, she was just beginning to hold on and take steps, making her way to learning how to walk. Her life changed at that time.
It all started with a simple cold. As the cold progressed and her symptoms begin to worsen, her parents took her to the doctor. She was diagnosed with RSV, a virus that affects the lungs and a person’s ability to breathe. By the next day, her symptoms had worsened. Doctors believed she also had croup. That night, as her symptoms continued to worsen, her parents took her to the ER where she was then diagnosed with RSV, croup, and pneumonia.
LilyAna was admitted to the hospital. Six hours later, she had a staph infection in her lungs and went into full respiratory failure. She was sent to Legacy Emanuel Hospital in Portland. Doctors there gave her a 3% chance of survival.
LilyAna was connected to an artificial heart and lung machine, a respirator and a dialysis machine. She was in a coma. She began taking 28 different types of antibiotics in an attempt to combat whatever infection was taking over her body. Against all odds, she slowly began to improve. She would spend 17 days on the heart-lung bypass machine and was then given a 30% chance of survival. She received 39 blood transfusions the first two weeks and became the 5th person in Oregon to ever be placed on a Centrifusion machine. This machine would take her blood out, spin it rapidly in order to clean it, and then return it to her body.
Eventually, doctors were able to remove the breathing tube. But, due to the fact that it had been in for so long, her airway began to swell shut. They had to do a tracheotomy to clean the secretions coming from her lungs and to allow her to breathe. LilyAna continued to defy the doctor’s expectations and showed improvement with each passing day. Eventually, they put in a “Mickey button” through which she would receive her food. Four days before her release, she had the trach taken out and she began to breathe on her own. After 97 days in the hospital, LilyAna was able to return home on her first birthday.
Because of the respiratory distress at the time of her flight to Portland, LilyAna received hot spots on her brain. She has now been diagnosed with cerebral palsy. She can no longer walk or crawl and has to relearn many things over again. She has trouble swallowing and is learning to eat and drink again. She was paralyzed on her left side but is slowly regaining her ability to move.
LilyAna is a beautiful little girl who loves her sisters, playing with stuffed animals, music by Jack Johnson, and playing with the car keys. Sparrow cash raised for LilyAna will help pay for speech, occupational, and physical therapy as well as ongoing medical and travel expenses.