Shocking history about Ruby

“Our sweet Ruby was admitted to the pediatric intensive care unit (PICU) in July very critical and intubated. She was in septic shock from multiple respiratory infections and pneumonia. She has a long history of mitochondrial disorder, Leigh syndrome and seizures, but we had never experienced an emergency like this. It was very scary and traumatic for all of us.

 The entire staff, including chaplains and environmental services, was supportive, reassuring and clear that they were there for us. When Ruby started doing better, her breathing tube was removed, but two weeks later, she was having trouble breathing again and suddenly needed it put back in.

 The physicians, nurses and respiratory therapists worked quickly and efficiently to stabilize Ruby and give us full chaplain support as we looked on. When her breathing tube was eventually removed again, we went home with some bipap support at night. We had only been at home for 18 hours when Ruby’s breathing took a turn and we were admitted once again in distress. 

Ruby was stabilized within a few hours, and we knew it was time to schedule her for a trach. We were scared to bring her home with this big change, but we felt so prepared and educated thanks to the staff looking out for Ruby and wanting her to be successful. 

So many incredible staff members bonded with Ruby while caring beautifully for our girl. Elaine, a night shift nurse, was one of many with a special connection with Ruby. Ruby recognizes her voice and her eyes, and they greeted each other with a smile each time. 

I cherish this picture not only because we love our Elaine, but it’s a snapshot example of how each member cared for Ruby with great tenderness and love, and included us in their care. After two months, we were finally able to go home, feeling well prepared to care for Ruby and find a new normal.

 Ruby is doing great thanks to the care and preparation we received from Advocate Children’s Hospital! We are so grateful for the entire hospital and staff and for the beauty found in such a hard time in our lives. God is working through their hands and hearts, and we are so blessed to have had them all!”