A Few Answers, More Questions

Well, Eddie came back to us and we are so thrilled to see him. He is resting now . . . watching a documentary about wolverines before going to sleep :-). Sarah headed home to be with the kids and I'll stay at the hospital tonight.

To the results . . .

This looks to be one of those scenarios where the good news and the bad news are all mixed up together. It certainly does look like Eddie is suffering from restrictive cardiomyopathy (RCM) based on the pressure readings from his heart and lungs. His results were 2-4x higher than normal which is obviously cause for concern, but consistent with the original diagnosis. The scariest findings were in his lungs since non-reactive pulmonary hypertension would disqualify Eddie as a transplant candidate. We do not want to consider our options if transplantation is off the table.

So Dr. Rubio decided to perform a "challenge" to determine whether or not the blood vessels in Eddie's lungs would respond favorably to applied oxygen. Basically, his pulmonary blood pressure dropping in response to oxygen would be a very favorable result and demonstrate sufficient resilience to be considered for a transplant. If the oxygen challenge didn't produce good results, he would conduct another challenge where Eddie would inhale nitric oxide to promote pulmonary dilation. Thankfully, Eddie responded favorably enough to the oxygen that Dr. Rubio didn't bother with the nitric oxide.

So our immediate dose of bad/good news is that our doctors are virtually certain that this is a case of RCM (bad), but that Eddie is very much a viable transplantation candidate (good). Our doctors are also sending blood samples to a lab at Harvard to conduct genetic testing to look for the particular gene mutations that define RCM and hypertrophic cardiomyopathy (HCM). If the results come back positive, then we proceed with absolute certainty about the diagnosis. Regardless of the root cause, however, we have very limited options for treating this condition.

Finally, an obvious concern we have in the intermediate term is how we can prevent Eddie from having another cardiac "event." There is one option we are discussing with the team which would involve inserting an implantable cardioverter-defibrillator (ICD) that would kick start Eddie's heart automatically in case of cardiac arrest. The ICD would be in place until transplantation at which point it would become unnecessary and need to be removed. We still have several questions about this option and will be discussing it in further detail with our doctors tomorrow morning.

So as we go to sleep tonight, we are comforted to know that Eddie is resting peacefully and that he came through his cath procedure well. We have a few more answers and know that transplantation is still a viable option. And finally, we are glad to have options on the table for addressing the very real concern of cardiac episodes in the near future. We'll take any victory, large or small.

More tomorrow . . .