Jenny came this morning to weigh Jaden and check his sats again. He was good all around except his weight. He had lost 20 grams since yesturday. With this, his cardiologist wanted to see him in the hospital and be feed with the NG tube. I however did not agree so declined that offer. They said if I was comfortable with him not being monitored all weekend then there was no other option. D.U.M.B. thinking on their part. Jenny will come Monday and at that point see where he is at and then we will recommend to Dr. Martin that he sees a GI specialist or get some GI x-rays. He may simply have developed major reflux or there could be something else wrong. We are not willing to just brush it off and assume we know what the problem is so we will do something further.
The site that Steph T. posted on is trying to "pass a Joint Resolution of Congress to declare February 7-14 as National Congenital Heart Defect Awareness Week!" This will help in many levels and is very important for families like us. Please go to this site and send a letter to our representative. The link listed will walk you through the steps. There is a letter at the bottom of that page that you can copy and paste. Then make sure to obviously personal the blanks. It will only take a few minutes. Thank you for your support. You can periodically send it multiple times and tell others to do the same. http://tchin.org/aware/letter.htm
With much love, Steph