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, May 3, 2018

1 Month Post Double Switch Update

It is officially one month since Nicholas had his Double Switch. Just looking at him, he's doing great! I have such a sense of relief that I haven't felt for months, if not years. Nicholas is looking so good. 

We saw Dr. Wright yesterday for a check up. He did not think we would need an echo or EKG since we had them last week. Dr. Wright thinks Nicholas looks great and as soon as we get the fluid off the lung, we will probably not need as frequent check ups as we've been having for quite some time now.

We'd taken a chest x-ray the day before to check the left lung, which has pleural effusion. We are trying to get the fluid off the lung and reduce the diuretic medication. Taking diuretics for an extended period of time can lead to electrolyte imbalances, which can directly affect heart function. The x-ray looked better than last week, so Nick's dosage can be reduced but not stopped. We will need another x-ray next week before another check up, and assuming that the fluid stays out of the lung, Nicholas should be off the diuretic within the next month. 

I completely thought that Dr. Wright would say that Nicholas should start going back to school, but he said he'd really like to take things slow and not push things too hard. Nicholas is looking kind of bored at home, and I know he misses his friends and the social aspect of school. He has been playing outside with friends in the afternoon, so that has been good for him. 

Not too much new stuff to report! 

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