Last week Will saw his cardiologist.
The echo was first. He did really well with the help of some good entertainment.
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| Choosing his next show on the Ipad. |
The sonographer pointed to the Ipad when we were done and said "That was a miracle".
Next was length, weight, and EKG. I couldn't get pictures of that because Will needed all of my attention. He tends to cry about having to lie down to get weighed. Luckily he is getting big enough that most offices let him stand on the big kid scale.
He cried a lot through the EKG. I think having 15 leads stuck to your chest is scary. Luckily it is quick, doesn't really hurt, but just looks odd. I wish I had a picture for him to look at in the future. That way he can see that he has survived them before.
Here is another tough heart kid getting his EKG at Vanderbilt:
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| While Will struggled through his EKG (imagine the above but with a lot of squirming) his foot caught some of the wires and he pulled half the leads off all at once. That made it last about 2 minutes instead of 1. |
Then we waited for a long time while the doctor looked over all of the results. An hour and a half into the appointment Will looked down at his chest, then at me and said "Oh shurt!". Translation: I just realized I haven't been wearing a shirt all this time. What is going on??
The report from Dr. Johns. "I couldn't be happier with what I saw". Will's echo is unchanged from the last one. His narrow pulmonary artery (see PA stenosis below) has not had any additional narrowing. This is the major thing we will be watching for Will's entire life. I refer to it as "his valve". His is one of the better TOF pulmonary arteries out there, but it could give out at some point because it works harder than the valves of most of us. They also continue to watch the hole that was closed between 2 of the heart chambers (called a VSD - ventricular septal defect). When they patched it a tiny gap remained on one side. Just something to watch.
At every appointment I learn something new. New thing #1 was about Will's activity level. It started with the usual question about us seeing any color changes. My answer is always the same:
He occasionally turns blue around the mouth, hands, and feet when he gets cold. Usually at the end of a bath. They nod and confirm that is normal for TOF. They also ask about his activity level.
Is he as active as he always was?
Can he keep up with other kids?
Do you have any concerns about how much energy he has?
I always say his activity level is really good. This time I asked if a change in that department will be a sign that his heart function is deteriorating. The answer was no, they just ask about it to get a sense of who he is.
That is unnerving to me. I prefer symptoms. Symptoms are an outward sign that something needs help. I
like the echo and ekg tests to confirm that his heart is as good as it can be...but I
really prefer symptoms as a warning first. Now maybe it is clear why this appointment is such a big deal in our lives. We never know if we are going to get surprised with bad news.
This leads me to the MRI. I learned from other heart moms that MRIs can give the most accurate view of heart structure.
Dr. Johns says Will's MRIs will start around ages 10-12 and he will get them every few years after that. They require sedation so they don't do them often unless they have a reason. Since there are no other signs that tell them to look harder at Will's heart right now it can wait. I am fine with waiting but that will probably be a nerve wracking day. Note to self: find a video of someone getting an MRI to show Will before his first one.
New thing #2: Dr. Johns said Will will probably have some sort of pain in his chest in the future. He said that their office has 15-20 teens come in per week with
non-dangerous chest pain. This is due to the chest wall being cut during open heart surgery... once it's been cut it is affected forever. It is just going to produce some kind of pain at various times.
Lastly, the doctor said he would be "amazed" if Will needed any more repairs in the next 10 years. And he "probably" won't need anything fixed in the next 10-20 years "if ever". Great news!
Other fun facts about the 2012 cardiology appointment:
He didn't have to have an Xray!
His pulse ox was 99!
If the appointment in 2013 goes this well Dr. Johns says he may recommend that Will not return for 18 months or even 2 years!
More photos to come!
