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!

Seven months of peace

It's been a while. I don't know if anyone checks this blog anymore, but I thought an update was due anyway.

We had a wonderful winter and spring. The baby grew as expected, and is now the busiest little boy I have ever met. He doesn't seem to have a fifth gear, but he spends almost all of his time in fourth. He spends most of his time exploring outdoors. Summer hiking season is coming,  and G is ready.

Today marks two months outside of all medical settings. This is huge. We had been averaging four or five appointments and ER trips per month over the winter, including monthly shots to boost immunity against the nasty cold, RSV. The time away from doctors and nurses has been wonderful for G. His anxiety has decreased. He is happy to be babysat by his grandparents, whereas he wouldn't even let them hold him in the past. He waves at the neighbours and plays with other children. We will see how he does in a few days, after his next ECHO and immunizations.

I am healing emotionally as well. I feel much more at peace with our lives now. It's easy to do, because this is a peaceful time. G has no scheduled procedures, he is growing and developing well, and he isn't currently on medication. We are enjoying this period of normalcy, because we know that this won't last forever. Eventually, his heart won't be able to keep up and something will need to be done. While these easy moments last, we are cherishing them.

There are a few questions we hope to answer at the ECHO on Thursday. Are the small, underdeveloped pulmonary arteries catching up on their growth, or will an intervention be necessary? How is the heart coping with the leaky valves? Is the pulmonary valve narrowing again, or growing like we hoped? Can we go back to ignoring this heart defect for a few more months, or do we need to be ever vigilant?

G is doing well. My husband and I discuss and rationalize and agree that everything will look good on the ECHO. Yet we live with the real fear that we will be blindsided with bad news again. In 36 hours it will be done, but until then we wait with baited breath.

G doesn't know our fear, and for that I am thankful. His biggest issue tomorrow will probably be convincing me that we need to go back to the park for a fifth time and that he should be able to eat chicken soup for all of his meals and snacks.

I will try to update after our consult on Thursday. If I am slow to get around to it, we probably got good news. I usually write when my heart hurts, and play when times are good.