orion had an echo and ekg today, and we got news we were not expecting at all. even though his echo and ekg were essentially the same, the fact that his two valves (the artificial pulmonary valve and tricuspid valve) have moderate to severe leakage (which has remained the same) PLUS having recently been getting more tired easily leads the cardiologist to believe there could be too much fluid in his heart and not enough fluid going out to provide oxygen. this brings us to having to repair these valves, which of course means another open-heart surgery. our first step is to try to reduce the fluid in his body and see if it changes anything. we are adding another dose of lasix his daily regimen. previously, he was on 3 doses, we brought it down to 2, but now we are going back to 3. we are testing this out for 3 weeks as well as getting some bloodwork done in a week to check his levels. if this does not help at all, we are going to have to talk about when surgery will be. but the doctor implied that orion will most definitely need a surgery sooner than we had planned (which was 5-10 years from when he had his artificial valve put in, march 2008).
i sure felt like things were normalizing around here!!! he seems so happy and really active and trying out new things. he's eating so well and really growing and developing how he should be. but the cardiologist doesn't want us to have to limit orion's physical activity, so this surgery will for sure help him to be a typical preschooler.
WE are just trying to absorb all the news right now. please feel free to post comments here or ask questions. it's been a while since we've been on this road!