Today was Lily's sedated echo and EKG down at the University of Iowa. This is the first time we have had an appointment down there since November...4 months, can you believe it? As amazing as Lily has been doing, I was pretty sure everything would be OK, but with these heart kiddos, you just never know. Most of them look perfect on the outside...you would never know anything was wrong. We got there at 8:30 and did all of our routine check-in vitals: weight, height, bp and O2 saturations...looking good so far! We got back to our room, everyone came in and checked her out and we got her sedated. The whole echo and EKG probably took only 45 minutes. The last time it seemed like it too forever. I was still feeling pretty confident that everything was OK until I saw the technician, the physician's assistant and Dr Reinking all talking...then my nerves started to get to me and all of these thoughts flooded my mind. Dr Reinking came in and looked over the echo and when he said "it's amazing how some of these pictures look like a completely normal heart" I knew everything would be fine. In fact, things are better than fine, they are wonderful! Her heart function is great! Although she is considered a single ventricle, Dr. Reinking states that she actually has two very strong ventricles that do all the work for her heart and her heart should last a long time!! He suggested that we try to take her completely off lasix. For one week we are going to give it to her just once a day and then the week after we won't give it to her at all and we will see how she does. Things we will be looking for will be swelling around her eyes, excessive sweating or fussiness. If we see those signs, we can give her a dose. Lily does have some stenosis (narrowing) of her left pulmonary artery so we are going to watch that. If it doesn't seem to get any worse, that is something that can be augmented during her Fontan procedure when she is about three years old. And...we don't have to go back for 6 months! Shortly thereafter we will have to schedule a heart catheterization and probably have one more before her next big surgery.
She is meeting all of her developmental milestones...lots of babbling, crawling, pulling herself up on furniture and cruising so they have no concerns with that. One area that they would like to have us get checked in the future is her hearing. Sometimes being on lasix can affect hearing as well as big surgeries that she has had.
Overall, we had an awesome appointment. We look forward to having an appointment free summer!!
I'm never moving again.
1 day ago