Short Update

Noah's EP study went well today. They were unable to induce any arrhythmias during the testing. It appears that he does not have any electrical problems with his heart at this time. He does not need a defibrillator right now. Yay! That's the really really good news. Unfortunately, the hypertrophic cardiomyopathy is definitely manifesting in the structure of his heart. We already knew that the ventricular septum was showing signs of thickening. During the EP study they also checked the pressures in different areas of his heart. The pressure in his left ventricle (the main pump of the heart) is elevated. It was a 12 today, and should be around a 6. When that happens it stresses the left atria. His is already a little enlarged. His mitral valve is not distorted, yet, but it is moving forward slightly into the aortic valve. Right now, he is ok. But, Dr. Knilans is concerned that he's showing such significant signs of the disease at such a young age. Especially since I did not exhibit any signs until age 12 and no structural signs until just now. He threw out some pretty scary terms and scenarios. Such as surgery to take out the enlarged part of his heart or simulating a heart attack in part of his heart to kill off the enlarged part. Such as a mitral valve replacement if necessary, a heart transplant if necessary. Whoa. Now, we are in no way headed that direction right now. But Dr. Knilans felt the need to answer my question (what could this progress to?) completely, and I appreciate that. No one can know how his heart is going to change and grow. This could be as bad as his heart ever gets. Here's hoping.

Noah will need to be monitored fairly often. Right now the plan is to see Dr. Knilans in a week, see the Cardiomyopathy team at Children's the week after that, have another echo in about 3 or 4 months, do a 24 hour holter monitor every so often and probably another EP study in a few years. He is also starting beta blockers tomorrow.

Well, that's the scientific, medical explanation. We felt covered in prayer today. I never felt out of control, scared, etc. I wasn't exactly peaceful--but more numb. And that's ok. We made it through. Noah was amazing. He had to lay totally flat with out bending his legs for 4 hours. After some agitation for the first hour or so, he laid still, giggled, played, smiled, learned a few new tricks, ate pizza, applesauce, crackers, nursed, drank apple juice and was just amazing. He did SO much better than we thought he would. We actually had fun with him. And I think he enjoyed the undivided attention from both Mommy and Daddy AND Ma. :)

Our prayers were answered. We all prayed for a clear decision. It was very clear that he does NOT need a defibrillator. Which is much better than the alternative clear decision of definitely needing a defibrillator. Now, if you don't mind, we need your prayers again. We need you to pray for his heart. Pray that it stops thickening. Pray that the pressure in his ventricle goes down. Pray that he doesn't need any surgeries in the future. Pray that his heart becomes whole and normal.

Thank you. Our boy is so precious to us and we are so thankful for your prayers!

(By the way--I apologize if this is unclear or confusing. I'm operating on very little sleep and I'm emotionally exhausted as well!)