Harley's Story:
Harley was born with Type IV Long Laryngeal Cleft and was the first to survive the extent of her abnormalities. At two weeks old, Harley was flown to Cincinnati, where a few days later, she had trouble breathing. From two weeks to five months old, Harley was intubated. Her parents were devastated at not being able to hold their precious daughter. At four months old, Harley went through a 13-hour-long open chest surgery, where they stopped her breathing and circulated her blood through a machine that oxygenated it for her, called ECMO. Her surgeon used tissue from her shin to build a wall to reconstruct her airway essentially. Harley now has a tracheostomy and feeding tube.
Harley Today:
On Saturday, January 20th, Harley became sick. Her parents took her to the emergency room. Her chest x-ray showed double pneumonia, and she was admitted for antibiotics. Sunday morning, Harley took a turn for the worse. She was transferred to a children's hospital in downtown Chicago. Harley became septic. She was on a toxic amount of blood pressure medications and antibiotics to keep her alive. She is paralyzed and sedated to help her body heal medically. Nothing was working. Harley was resistant to the antibiotics. The family had that difficult conversation with the doctors right before they decided to try one more antibiotic and one more different vent.
To everyone's surprise, Harley showed how strong she is! Her x-rays and labs improved, and she was weaned off the blood pressure meds and in the process of weaning her vent settings.
HARLEY IS A MIRACLE!
Her fight is far from over. The blood pressure meds had discolored her hands and feet, slowly becoming necrotic. There's a lot of concern for organ damage, limb safety, sepsis, and this raging infection. But she is stable.
The Wristbands:
Designed by her home health nurse and mother, wristbands were created on behalf of Harley. The red ribbon represents being a strong sepsis survivor. & of course, in Batman font cause you know ;)
50% of the commission will go towards the Sepsis Alliance Organization (SAO), and the other 50% will go to our brave little girl, Harley.
As always, keep sending prayers!!
#HopeforHarley #HarleyStrong
- Lexis