A New Perspective: Double It Up!

Today we had a double cardiology appointment for Dylan and little brother Weston. Dylan goes in yearly, and Weston has been going in every two years. What a difference a year can make! Dylan was cool as a cucumber today going to the doctor. I was nervous about it, based on his past fears and experiences. But he was totally calm and excited to go. This was very helpful because Weston decided that he didn't want to be there. But Dylan did everything first with a smile on his face, and that made it easier for Weston to follow him.

What a big boy....doing the EKG with no complaining or tears!

Weston watched nervously and kept saying, "No, I no want the bed!"

But the nurse was very patient and hooked up Weston on my lap. She let him put some of the stickers on himself.

He thought that putting them on his shoes would be a good way to get a heart reading.

Enjoying a well deserved lollipop

The results: Weston's VSD is not gone, but is not causing any problems. It may or may not go away on its own, but it doesn't make any difference. It just makes noise. We can handle a little noise!

Dylan's heart has not really changed in any big significant ways, which is very good news. We have noticed that he gets tired before his peers sometimes when doing physical activity. I probably wouldn't give this a second thought, but because of his heart defect and knowing that at some point he will need a valve replacement, we are extra sensitive to looking for any signs that his heart is changing for the worse. It has been impossible for me to know whether or not his getting tired has to do with his heart, or more with his personality. This is the question that I needed an answer to today.

To make sure that we had complete information, the doctor ordered an ECHO today, which we were not planning on. But after looking at the EKG, ECHO, and listening to his heart, she determined that his heart was not the cause of his fatigue. Whew! I did learn that as his pulmonary valve continues to create a back flow of blood, this will eventually cause the right pumping chamber to dilate and stretch, which is not good. As he gets bigger there are other means that they will use to determine when it is needful to do a valve replacement, like exercise tests, which include riding a stationary bike or running on a treadmill while hooked up to monitors, as well as doing an MRI on the heart. Dylan is too small for these things at this point, but they will be in his future. I also learned that medical technology is advancing every year, and if Dylan is big enough, they can now do total valve replacements through the arteries without having to do an open heart procedure. This is huge news for me! If we can get what Dylan needs without having to open his chest, it will be such a better recovery. This was not an option five years ago. Things are advancing quickly. So our goal is to get him big enough and old enough to qualify for that kind of procedure in the future. So far, so good!

I am so grateful for this wonderful woman and for the care that she has given my boys for the last 5 1/2 years.

Dylan is now in full day kindergarten, which has been a huge adjustment for all of us, but he is excited to go to school now and loves learning. These boys are both growing up too fast!

Here are the boys headed home with their prize for the day....heart shaped crayons! The nurse makes these out of broken crayon bits in her oven. Weston kept on licking his....he thought it was candy. Blech! :)