Camden's Journey: Beating the Odds

Camden has been beating the odds with heart disease since he was born in June 2011. Camden was born with DiGeorge Syndrome, Tetralogy of Fallot and Pulmonary Atresia. I spent 10.5 years in the Army, and when Camden was born our family was changed forever.  It came to the point where my family needs outweighed the needs of the army so I received an Honorable Discharge in December 2012.  As a result of my discharge we were in the process of moving from Florida to Washington State; all of our household goods had been packed and shipped to WA. Camden had to have open heart surgery before we left Florida, and once all of his Doctors were okay with Camden making the drive we began our journey. We made it to California without a problem, but once in CA things changed drastically. We woke up the morning of December 16, 2012 to our son having a high fever so we took him to the closest ER where he went into respiratory arrest. Once stable he was transferred to Children's Hospital Orange County (CHOC) where we were confronted with our worst nightmares. Camden was in far worse shape that we ever could have imagined. His heart was failing fast and we had to place him on ECMO (extracorporeal membrane oxygenation). Later that night Camden went into V-Fib arrest and once again had to be resuscitated. At this point we didn't know what was going to happen, all we could do was pray and let him know we were there for him. In the coming days, the Doctors told us that Camden would need a heart/lung transplant. Before Camden could be properly evaluated he had another emergency, this time in his abdominal cavity. As a result of CPR and being on ECMO Camden had a bleed in his abdominal cavity which required emergency surgery; this was the first time we had ever been told to truly be prepared for a bad outcome. Camden proved the Doctors wrong and miraculously survived surgery. Now at this point we had to figure out where to take Camden for his transplant evaluation. Seattle was out because they didn't have a heart/lung program. We narrowed down our options to two places, Stanford (CA) and Shands (FL), and ultimately decided on Shands Hospital for Children in Gainesville, FL. Once we arrived back at Shands Camden was evaluated for transplant, and although all the Doctors believe that transplant is Camden's only option, they did not all agree that he was stable enough to be listed. Camden suffered a brain injury during one of the two times he arrested in California, and when he returns to his baseline neurological status he can be listed. Until he gets listed for transplant Camden gets extensive physical, occupational, and speech therapy every day. Camden is doing amazing, and continues to prove the Doctors wrong everyday (which they enjoy), but now that we have had a chance to breath there are many more non medical obstacles to cross. All of our household goods are sitting in storage in WA State, and with Camden's transplant needs we will not be moving back to WA for many years. In addition to our household goods we have to make quarterly payments to our insurance company in order to continue receiving those benefits. So here we are, laying it all out on the line and asking anyone who sees this page to share with my family anything they can spare.