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Archive for November, 2015

An early morning at Texas Children’s made for some tired people in the Lake house yesterday. We were all exhausted bother physically and emotionally. We heard some unexpected news from Dr. Altman. 

First the good news. His aortic valve looks great. He has minimal leaking in his aortic, mitral, and pulmonary valve. And his heart wall has returned to normal size. 

Now the bad news. Ben has developed a narrowing of the vessel above his pulmonary valve. This has happened quickly. In August he had a gradient of 11mmHG and now he has a gradient of 35mmHG. In comparison, 20 and under is normal. Numbers in the 40s and 50s require intervention.  She believes that the narrowing is due to inflammation. But it is hard to tell on an ultrasound. So the narrowing could be due to calcification. The pulmonary valve is a donor valve. Where the inflammation is taking place is at the bottom where the donor valve and Ben’s tissue meet. The inflammation could be due to an immune response to the foreign tissue in his body. His valve is not rejecting she said. It is working great. But Ben’s body hasn’t made friends with the donor tissue yet. So we go back the beginning of February to check on it again.

What can be done to fix this? If the narrowing is due to inflammation then Ben can have surgery to place a stent to open up the vessel again. This would be done in the Cath Lab. If the inflammation is due to calcification, then been require open-heart surgery again. I asked her what the odds were that this could go away, and she said that this was an unlikely scenario. What she normally sees is that either the inflammation plateaus and stays where it is or it gets worse. She said two things that were funny yesterday regarding Ben. One, if something were going to happen it’s likely to happen to Ben. And two . . . When Ben’s heart decides to misbehave it tends to do it quickly.  For example, his subaortic  membranes, once they were discovered grew so quickly that we had to intervene with open-heart within six months.

On the other side of it all, she is concerned about Ben’s fatigue. And since fatigue is a sign of the stenosis getting worse, she wants us to rule out other causes of this fatigue. She thinks that his fatigue is due to his snoring. And that boy is a direct descendent of Chris so he is really good at snoring. So yesterday afternoon we visited his pediatrician and have started the process of looking at his adenoids, tonsils, and possible sleep apnea. We told the doctor that we wanted to get this all done by December 31 because we didn’t have to pay for anything medically right now. And she agreed to help us move quickly. 

So that was our report from yesterday. Emotionally it was not the news we wanted to hear. Chris and I are still processing all of it. We never thought that anything like this could happen. So the fact it wasn’t on our radar means that we had not mentally prepared ourselves for that news. Ben is mad. He is glad he doesn’t have to have surgery now, but he’s ticked at the fact that yet again something else has gone wrong. This is not a worst-case scenerio, we know that. The news could’ve been much worse. So we will take what we’ve been given and deal with it. It is what it is. So now we have to deal with it.

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