Ellie was born on August 26, 2011. She was four weeks early but appeared to be healthy and was doing fabulous after birth. On November 26, 2011, she was three months old, Ellie was put in the hospital due to having diarrhea and being dehydrated. They assumed she had a stomach bug and would be okay within a few days. That night her oxygen saturation level dropped to 79%, they should be in the upper
90's. The nurses tried a variety of interventions before placing her on oxygen. She improved with oxygen. The doctors were convinced that Ellie had contracted a rare virus and would be fine within a few weeks. We returned home 10 days later. Over the next four months Ellie was hospitalized for various reasons but was doing great except for the need to be on oxygen. If we removed her oxygen her saturations would drop. In March 2012, her doctors agreed that it was time for another opinion. Ellie had undergone multiple tests, all of which appeared normal. We met with Dr. Stuart Sweet at St. Louis Children's Hospital. He requested a second chest ct scan. We soon found out that it was abnormal and Ellie was diagnosed with Childhood Interstitial Lung Disease. This is a spectrum of rare lung diseases. The only way to determine what disease she had was through an open lung biopsy to be performed by Dr. Umar Boston. On May 25th we arrived at St. Louis Children’s Hospital with a normal rambunctious 9 month old that was on oxygen. Ellie underwent a biopsy that was supposed to keep her in the hospital for a few days. That day changed our lives forever. Ellie could not tolerate having her breathing tube removed after surgery. She was placed in the Cardiac ICU where she suffered 13 pulmonary hypertensive crises. These consisted of her ‘crashing’ where her heart rate, blood pressure, and oxygen saturations fall into critical ranges. We were told she was not going to make it on the morning of May 29th. Later that morning she was placed on ECMO (full mechanical life support). This was a temporary solution but we were hopeful she would get better. The doctors were shocked that she was so critical and were unsure of what to expect. On June 4th we were told that Ellie needed to be listed for a double lung transplant if she had a chance at survival. On June 8th Ellie needed to come off ECMO before her other organs started suffering. We made the decision to place her on an experimental device called Quadrox. This is basically a lung outside the body. This particular device had only been used on two other children in the world. Those two children passed away and both suffered strokes while on the device. They told us Ellie's chances were not very good but it was her only chance. Ellie did great through surgery. We were prepared to wait 6-8 months for a lung transplant and could only pray that Ellie would be strong enough to get through this. On June 11th we received a phone call that there were lungs for Ellie. It was a miracle! She is the first child in the world to successfully use a lung assist device as a bridge to transplant. She received her double lung transplant on June 12th, mine and my husband’s 8 year wedding anniversary. We have since found out that Ellie had a condition called ACD (alveolar capillary dysplasia). This is extremely rare and Ellie is the oldest survivor of this condition. It is something she was born with but it is by a miracle that she survived as long as she did before getting really sick. Ellie truly is a miracle. She could not have gotten through this without the amazing doctors at Children's Hospital. Dr. Boston and Dr. Sweet are our heroes. Feel free to donate to our cause!!! https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=5AUW4LUWVN35G
