ECHO was good

   G had his first sedation appointment at the clinic today. He had to fast beforehand, so he missed his usual 6:30 am nurse and the hours of sleep that come afterward. He was tired, hungry, and very grumpy by the time we got to the clinic.

   The sedation itself was actually pretty funny. Little G was laughing and happy, and clearly a little high. This is the only time I will be happy to see my kid on mind altering drugs. His medical anxiety is very real, and as the ECHO technician said today, this isn't his last rodeo. The sedation is essential to get the difficult pictures they need this time, and saves us the memory of a bad experience for next time.

    He is now peacefully snoozing the last of the drug off, and I am finally getting a bite to eat and a cup of coffee after being awake for 6 hours.

   The ECHO looked good. He is right where we expect him to be. That pulmonary valve is still very leaky, but the "doorway" and arteries downstream are wide. This means that the right side of his heart has to work hard to compensate for the back flow, but it doesn't have to work hard to squeeze blood through teeny tiny arteries. If there was significant narrowing of the arteries (which could happen over time), the overload on his heart would be too much, and we would need to do something about it. As it stands now, his heart should last until his teens or early adult years, at which point he will need a valve replacement. Anything could happen between now and then to change the plan, but we are happy to keep on living life as normal in the meantime.

    His regular weight checks can stop for now as well. We will continue to see his pediatrician every few months, especially to check in on his overall development and see about getting in to see the geneticist. We have been given the go ahead to travel if we wish, taking "normal toddler precautions." He is not to have activity restrictions at this time. TOF can lead to arrhythmias, so he may have restrictions later on. I asked if we just get to live as "normal parents," and the cardiologist said, "Yes. Exactly. "

   It's quite strange to think of myself as a "normal" mom. About a year ago, I became a "heart mom," and even though times are peaceful, I think I will continue to wear that badge. Some people have told me that I am not a heart mom, but instead the mother of a child with heart disease. None of these well meaning folks had chronically ill children. All of my heart mom friends also identify as heart moms. We have earned the name with all of the work we put in, medical terminology we learn, and nights we spent listening to the beeps of our children's monitors. Perhaps I will just save the label and use it with my other heart mom friends. They will understand.

Regardless of how I identify, it looks like the next six to nine months will be filled with life outside of the hospital. Beaches. Parks. The yard. And best of all, home. Bring it on!