01 February 2012

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 . . .


  1. Oh, goodness, John, it's so much to take in. I have a 3 year old, too and don't even want to imagine what you're experiencing. But we also have some recent experience in the peace and comfort that comes from the Holy Ghost at these times. Let it continue to sustain you all.

    Our prayers are with you and we will hope for more of the good kind of news tomorrow.


  2. Answers help, even when they are hard to hear.
    Love you guys.

  3. It melts my heart to see our little guy in that great big bed! He looks so vulnerable.

    I am in awe of the medical professionals who are helping you. I am so grateful for their intelligence and training, their determination to be thorough, their resources. I am also grateful for the Holy Ghost who will be with them and with you and with Eddie. What a great team that makes!

    Thank you for the blog. The information is much appreciated; the pictures and video are priceless and mean so much!

    Love, MOM P.
    P.S. I'll try to figure out a different profile so I don't have to post as "anonymous" :-)

  4. Thanks for the Update! We are so interested in seeing that happy face on Eddie and this seems to be almost all good news. I too have a pacemaker... so I am bionic though not the same device. When the Dr stated that I needed one, he said that their wasn't any downsides except that I had to be patted down at the airport, he stated that it would just be there if I needed it. Lots & Lots of hugs along with the prayers. Lots of People Fasting for you guys this Sunday. It is so encouraging to know that HF Hand is over us all.

  5. Shelley Kaplowitz02 February, 2012 15:33

    Our hearts and prayers are with all of you!