Monday, March 15, 2010
Big Appointment Update
Today was Conway's 2 month follow up at the cardiologist's office. At the last appointment, we changed the pacemaker settings so that he wasn't beating so fast and this was the appointment where we would see if that improved his ventricular function or not. He remains asymptomatic and seems to keep up just fine with the other kids in his preschool class according to his teachers. His appetite is good and now that he's not sick anymore he's put on a couple of pounds in just two weeks! We've even been given the okay to switch him to 2% milk from Vit. D. His echo is pretty much unchanged and his squeeze actually looks pretty good in all but one plane or view. Upon exam he actually sounds the same and his liver is a tad smaller (a good thing, enlarged liver is a sign of heart failure). He definitely doesn't present as patient with a poor squeeze or cardiomyopathy. What is still concerning is that his ProBNP, a blood test that measures heart failure, is still very elevated. His levels that were drawn last Wednesday were close to 3000 and normal is considered 150. Again, this test has not been studied much in the pediatric population and we don't know if the higher the number means a more severe level of failure. All we do know is that when he was very heart sick he was 7000, when he was "all better" eight weeks after mitral valve repair he was 1900 and now he's 3000. That says he's worse than the fall, but not as bad as last spring. Given that information, Dr. Bromberg wants to proceed cautiously and treat him as if he were a patient with dilated cardiomyopathy. I thought we'd be devastated hearing that news today and even asked Greg to come to the appointment with me thinking that my pregnant, hormonal self might lose it. However, we left feeling somewhat relieved. He's NOT getting worse, he acts fine, we're just taking precautions. Dr. Bromberg says he wants this heart to last Conway another 80 years and he's unsure what exactly could be making that one view look off. It could be an injury from his first surgery and it's just going to stay at that level of decreased function forever, it could be that the aortic valve is a bit leakier or it could be this degenerative dilated cardiomyopathy business. Our biggest concern is with preserving the function he has now and not letting this get worse. It may not ever get worse on it's own, but we don't want to find out. For now we are starting him on Aldactazide and we go back in two months for another follow-up. At that time he will likely start Carvedilol (Coreg). We are coming off of the thyroid drug since his TSH was normal. At one time it looked as though he may be free of any heart drugs and that's not looking so likely now. The important thing is that the word transplant "isn't even in the discussion" according to Dr. Bromberg. Acting on this now is hopefully what will prevent that becoming necessary in the next 20-30 years.
Posted by Erin Beckemeier at 2:33 PM