We've set up this site to keep everyone up to date on Eddie's progress as well as giving you the opportunity to share your thoughts and well wishes. We are so thankful for each of you and, in spite of the challenges we'll undoubtedly face in the days/weeks/
Take a minute to read Eddie's background story and diagnosis. Also, please feel free to leave a few comments. Know that we read and cherish everything you write even if we can't always respond personally.
We love you all and thank you for your prayers!
We wish we could talk with you in person to tell you about this and to let you know what is going on in our lives and to ask for your support and patience. We're going to need it! We don't have a problem talking about these things or answering questions in person, but felt it would be overwhelming to seek out each of you and let you know the basics.
Cause for Concern
On the evening of Sunday, January 8th, Eddie (who turned 3 in October) passed out without any apparent cause and John could not detect breathing or heartbeat for about 3 minutes. Since then, doctors have said there is a good chance he was faintly breathing and his heart was faintly beating, but it was an incredibly shocking episode for our whole family. "Stefano" actually picked Eddie up and felt how limp he was, and the entire family was present while Sarah was on the phone with the 9-1-1 dispatcher and while John applied CPR. By the time the Duvall EMTs arrived about four minutes later, Eddie had started breathing and was slowly regaining consciousness. Eddie was taken to Evergreen ER in Kirkland for tests and released at 11:30 that same night.
Looking for Answers
On Tuesday (1/24), Eddie went for his cardiology appointment at Seattle Children's to see if they could tease out any possible causes for his collapse. After an EKG and echocardiogram (basically an ultrasound of the heart), Eddie was diagnosed with Restrictive Cardiomyopathy. His left atrium was described by Dr. McQuinn, head of the department, as "huge." This is an extremely rare disease . . . especially in children . . . and there is very little research available to our doctors. Of the three types of cardiomyopathy, restrictive cardiomyopathy is the rarest and least understood.
On Wednesday (1/31), Eddie will undergo a procedure called catheterization to determine the pressures of the blood as it moves through and out of his heart muscle. After this procedure, the doctors will have a better idea of what will be needed. As we understand it, there is no treatment or cure for this disease and Eddie will need a heart transplant. The catheterization will help determine where he belongs on the transplant list.
We are really glad to have a diagnosis. It is a blessing that through his collapse earlier in the month we have been led to know what can be done to help Eddie. We are very optimistic and look forward to this opportunity to become closer as a family and closer to those who will reach out to support us. We believe that whatever the short term or long term outcomes, Eddie and our family will be okay. We believe this life is a time to grow and learn and make choices that help us become more like Jesus Christ. We know that just as we are with Eddie now, he will be a part of our family after our time in this life ends. We know that if he doesn't get to stay with us now, he will be in a wonderful place until we get to see him again.
What You Can Do?
We appreciate any positive thoughts, prayers, moral support, and love in the coming months. Thank you for your love and support and for caring about our family. It truly makes all the difference to have good people cradling us in this "best of times and worst of times."
We love you.
Sarah, John, "Stefano", "Liz", "Phil", "Janey", and EDDIE!