Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Thursday, April 5, 2012

In Surgery

My hopes of it being less dramatic due to Nicholas' age was shooting pretty high, but he did really well considering they just started his surgery at 3pm this afternoon.  It was a little easier than the other time when we were the second case, but he was really starting to feel hungry, thirsty, and emotional after we had to wait and wait and wait.

This is the first time that I have been able to accompany him to the operating room....I had accompanied him once to his MRI a while back, but this time he is older, he knows what is going on, and he is smart enough not to be fooled about what's going on around him.  Despite him having his usual dose of "happy juice", he cried when we got in there and he was visibly very emotional about his surroundings.  Usually he is giggling and charming the nurses, but this time not.  So of course, I am feeling emotional as well.  But that's pretty typical for me.

We saw Dr. Hanley while we were waiting in the waiting room.  He again reassured us that they will take good care of him and he explained what he thinks happened to the band.  He suspects that it loosened up or broke somehow shortly after it was placed back in July.  He thinks this because Nicholas' gradient seemed to be dropping shortly after his surgery.  He said that if the gradient had stayed higher until mid way through the last six months, then he would be leaning more toward "erosion".  I am not sure if this is good, bad, or indifferent.  Let's just hope it works this time. 

He is booked for an 8-hour surgery slot, but hopefully it won't actually take that long.  I'll update as soon as I hear anything.

  

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