Monday, January 5, 2015

Our Heart Journey is on going....

  First we were sadden to hear the our beloved Cardiologist for Shane is leaving Primary Children's Hospital and going to Denver children's hospital. I took this news very hard.... I cried, got sick to my stomach then cried some more. Its not easy not being able to say goodbye to a doctor who shed tears with you,fought for your son and gave you difficult news,but also positive news. Laughed with us and saw our miracle boy grow. She knew our history and didn't want another replacement it just wouldn't be the same. So attending Shane's annual Heart appointment with out our familiar doctor I was worried. Not only was a worried about how Shane's heart was doing, but the "new doctor" too.

  We woke up early and left our home at 7:30am for an appointment at 9am. We arrived early but got in early. The echo is always first and usually takes some time
I'm amazed at how well Shane always does laying there having a stranger put goop and a strange device moving around on his chest. For at least 30 mins or more. He is such a trooper!
  I was watching the screen of the echo tech and nothing ever gets easier no matter how many times we do it. The more you do it the more familiar you get with the pictures of the heart and you can clue in to what is good or bad. Sometimes it's just a feeling sometimes you see it by the sloshing of red and blue together that shouldn't be together.  These appointments never get easier. 

  After the Echo we wait a little more because the doctor looks over the results. We met our new doctor's assistant she was very nice and we discussed what was new with Shane. Then the doctor came in and did it again. Our new doctor actually specializes in abnormal heart valves so we were actually grateful we got him and I'm sure our old doctor had that in mind, when we got refereed to him or however it works. After we got him all caught up. He gave us the results of the Echo, Good news is always first. He said that Shanes coarctation look great,VSD, ASd , patches look great also and his left side of his heart was pumping fantastic.  Then he gave us the bad news. Shane's BAV bicuspid aortic valve had a significant more leakage than the previous year and he said that surgery would be needed as it gets worse.  Most likely before he turns 12. As Shane grows his heart grows too so he might need two valve replacements before he turns 20. We will just wait and see. 

 The news of more open heart surgeries several in fact is hard to take, nobody wants to see your child suffer through that. As shane's valve leaks gets bigger his heart works harder and they dont want all the same things to happen like before. So we will go back in another year and hopefully not any sooner.:)

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