We visited Coley's cardiologist and pediatrician last Thursday. All reports are good! They both say he looks, sounds, and acts healthy! We are SO happy about that - he's doing better than we could have ever expected.
Because he's eating well, gaining weight, his blood oxygen level is at an acceptable level (it's at 86 - lower than a couple weeks ago when we took him home from the hospital but still within a normal range), and his lungs sound clear, the cardiologist is happy and we don't have to go back to see him for three more weeks. He didn't even feel it was necessary to look at the heart with an echocardiogram - he could tell what he needed to tell by his behavior, color, and weight gain. Looking forward, this basically means that as long as his color remains good (he's not cyanotic), he continues to eat well and gain weight, and his energy level is enough to allow him to eat enough, he won't need surgical intervention for several weeks or months. We're hoping that he continues to do well for at least 8 weeks, then he won't need a Blalock-Taussig (BT) shunt or a balloon inserted via catheter to expand the pulmonary artery. Instead, if he can wait until 2 months old or so, he would have a Glenn procedure. The superior vena cava (SVC) bringing blood back from the head and upper body is taken off the heart and reconnected directly to the pulmonary artery (PA). If I understand things correctly, this will mean that this blood goes directly to the lungs from the new SVC-PA intersection, rather than going through the heart first, which alleviates some of the burden on his one ventricle that pumps both to the lungs and the body. See this website for more info on that procedure and the next one, called a Fontan procedure, which does the same thing, but with the inferior vena cava (IVC).
Then we were off to our pediatrician. She also says his color looks great and that he has great muscle tone and reflexes. She also successfully gave him his vitamins, which he has been completely rejecting until now. She used the pacifier after every few drops. Great trick!
He's been sleeping pretty well for 2-4 hours at a time (mostly 3-hour stretches). Now, however, we're starting to struggle with gas that seems to cause him discomfort. We're working on perfecting our abdominal massage and leg-bicycling techniques, and I've stopped eating cruciferous vegetables and legumes - bummer! But it seems to be improving. Let's just hope that as we approach 3 weeks we don't encounter colic... or any otherwise unexplained screaming/crying...
