(Written February 2004)
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Joseph born 7-7-03 with Tetralogy Of Fallot. He was born by emergency c-section because he was breech! After that little suprise everything was as normal as could be! We spent 4 days in the hospital together with no problems. Ten minutes before being discharged, the nurse came to me and said that they could not release Joey because his o2 levels were low. I did not have any idea what that meant and immediately started to cry, not even realizing what the next few hours were going to bring! Within a few hours they told me a cardiologist was on his way and that once he got there he would do some tests to find out if his problem was heart related. At this point they were not sure, but thought that it may be! I was terrified!! Once the cardiologist got there he did an echo and came up to my hospital room (I was already discharged but they let me stay in the room until we knew what was happening) to explain to me that my baby had a heart disease called TOF!! I did not really hear much else after this, my whole life started spinning and his words were useless! I was trying to understand what he was saying but all I heard was that there was a problem with my babys heart and I couldn't even start to imagine what was going to happen!! He told us that Joey was going to be transfered to Schneiders Childrens Hospital where they would do some further testing and then he would have Open Heart Surgery! I could not even believe what I was hearing! I'm still waiting to wake up!! So to make a long story a little shorter... He was transfered, they did a cath. and then at 8 days old he had his OHS!!! Which was a partial repair. They did something called an Outflow Patch. Which was to increase the blood flow to his lungs and also hope that that would cause his PA's to grow! They will have to do a final repair at some point. We are hoping that he will only need 1 more surgery! I still do not know how we made it through the 1st one. When I think about everything that went on, and remember myself at some points praying to God to let my son live! It was the hardest 21 days of my life!!!
He just had a cath done on Feb 9th that showed he is ready for his final repair. I am happy b/c they are saying that this should be his last surgery. But I am also terrified to know that we are soon going to be going through those hard times once again!
Copyright (c) Deirdre ~ 2004
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