We'll take Eddie to the hospital at 9:15 tomorrow morning to be prepped for the catheterization. The cardiologist will be Dr. Rubio, and I had the chance to talk to him yesterday over the phone. Basically, he will conduct a right and left cardiac catheterization to measure the oxygen and pressure inside his heart.
He also plans to perform a myocardial biopsy which should help confirm the diagnosis and rule out other potential conditions such as constrictive pericarditis. Based on what he sees, Dr. Rubio may also perform a couple challenges on Eddie's heart and lungs to see how they respond to fluid and oxygen. For the latter test, it sounds like he would introduce nitric oxide through the respiratory tract (inhaled) to dilate Eddie's pulmonary blood vessels. He mentioned he would only perform this last challenge if Eddie's pressure measurements were high.
Based on his initial viewings of Eddie's EKG and echocardiogram, he doesn't see any telltale signs of high immediate risk. He was very clear that if the RCM diagnosis is confirmed by the catheterization, then transplantation will be the only option, but he's not ready to make that call yet. He reiterated that heart transplantation is not a cure, but rather a life saving option that introduces entirely new challenges. I assured him that we don't expect any quick fixes, but that we have faith and confidence that by counseling together we can arrive at the best treatment options and make the necessary life adjustments. We are prepared to accept any potential outcome . . .
John
31 January 2012
Eddie and the EEG
Today Eddie went to Seattle Children's in Bellevue for an EEG. This was to discover whether there might have been a neurological cause for his collapse January 8th. It is also great to have a baseline for his brain activity as he begins treatment for his heart condition.
We kept him up 3.5 hours later than normal last night, and he didn't take a nap yesterday, so he was extra tired. He was quiet and still as the tech attached the electrodes to his scalp and a couple to his chest. I was so glad Eddie was able to fall asleep on demand so patterns during sleep could be measured.
We dropped John off for a day's work after the test, and Eddie and I bought milk and a few things at the grocery store. He was still in his green striped sleeper and had really crazy hair from the goo and the stuff that took the goo off. We discovered we could make it to story time at the Duvall library, which Eddie hates to miss. After that we got Eddie dressed in the car and he played at the park by our house, pushing his bear in the swing . . . he had a great time. It was so nice to see him active and happy.
We had so much help and compassionate visits from friends today. The kids were taken care of before and after school, we had a fabulous hot dinner brought in, and we got lots of hugs and even some yummy cookies! Eddie and I actually took a short nap together too, once all the excitement was over.
Thanks to all who helped in so many ways today--we couldn't make it through without you all! Keep us in your prayers tomorrow. We hope for the best possible results after his catheterization.
We kept him up 3.5 hours later than normal last night, and he didn't take a nap yesterday, so he was extra tired. He was quiet and still as the tech attached the electrodes to his scalp and a couple to his chest. I was so glad Eddie was able to fall asleep on demand so patterns during sleep could be measured.We dropped John off for a day's work after the test, and Eddie and I bought milk and a few things at the grocery store. He was still in his green striped sleeper and had really crazy hair from the goo and the stuff that took the goo off. We discovered we could make it to story time at the Duvall library, which Eddie hates to miss. After that we got Eddie dressed in the car and he played at the park by our house, pushing his bear in the swing . . . he had a great time. It was so nice to see him active and happy.
We had so much help and compassionate visits from friends today. The kids were taken care of before and after school, we had a fabulous hot dinner brought in, and we got lots of hugs and even some yummy cookies! Eddie and I actually took a short nap together too, once all the excitement was over.Thanks to all who helped in so many ways today--we couldn't make it through without you all! Keep us in your prayers tomorrow. We hope for the best possible results after his catheterization.
Setting Out . . .
Hello dear family and friends.
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!
Background Story
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.
Next Steps
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.
Looking Forward
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!
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!
Background Story
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.
Next Steps
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.
Looking Forward
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!
