My husband and I read Sam's story in the High Country Press, and we were very moved by his story and your family's journey. We also related to your story in very similar ways. We are in the Boone area, and our 7 year old son was born w/ multiple complex congenital heart defects. One of his defects was of the electrical system of his heart: WPW or Wolfe-Parkinson-White Syndrome. He had a extra pathway in his heart that caused him to have arrhythmias. We did not know about his heart until right after he was born & he started to have problems. He went into SVT or Supraventricular Tachycardia which was the start to us learning just how complex his heart was. The day of his birth our world turned upside down & we found out just how lethal arrhythmias can be as well. He has undergone 3 open heart surgeries for his defects & a radio-frequency ablation for his WPW. At 5 weeks old we heard some words similar to ones you heard "infants just do not go from SVT into V-Fib"...however ours did & did so twice. Fortunately by the grace of God, he was brought back to us. He spent the next 5 1/2 months at home on a heart monitor & we had many, many sleepless nights. It was decided when he was 6 months old that due to his lethal arrhythmias he would under go a radio frequency ablation to burn the extra pathways now rather than at 4 years old when they prefer to do them. His electrophysiologist had not done one on a child this young either. Fortunately the ablation has held & he has not had anymore episodes. We know that there is a chance he could have another pathway that comes out of dormancy but for now we are thankful to have that part behind us.
In 2006 he was granted his MAW. His wish was for Thomas the Tank engine to take him to meet Shamu. Thomas was busy (grin)& not able to take him, but he was happy w/ Amtrak instead & he too left out of Raleigh overnight in a sleeper room then had a one on one meeting with Shamu. Truly a most magical of experiences to say the least.
These children are amazing & while they are enduring way more than anyone should, they also have an amazing tenacity for life. Sam is in our thoughts and prayers that he continues to do well.
If you would like to read more about Xander's story please feel free to visit his carepage at www.carepages.com . His carepage name is Xanderhaveloscarepage (typed as is, no spaces...long one I know). There is a section "About Xander" that shares his story.
Warmest regards & best wishes, Kim, Tommy, & Xander
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Dear Bill and Tessa,
My husband and I read Sam's story in the High Country Press, and we were very moved by his story and your family's journey. We also related to your story in very similar ways. We are in the Boone area, and our 7 year old son was born w/ multiple complex congenital heart defects. One of his defects was of the electrical system of his heart: WPW or Wolfe-Parkinson-White Syndrome. He had a extra pathway in his heart that caused him to have arrhythmias. We did not know about his heart until right after he was born & he started to have problems. He went into SVT or Supraventricular Tachycardia which was the start to us learning just how complex his heart was. The day of his birth our world turned upside down & we found out just how lethal arrhythmias can be as well. He has undergone 3 open heart surgeries for his defects & a radio-frequency ablation for his WPW. At 5 weeks old we heard some words similar to ones you heard "infants just do not go from SVT into V-Fib"...however ours did & did so twice. Fortunately by the grace of God, he was brought back to us. He spent the next 5 1/2 months at home on a heart monitor & we had many, many sleepless nights. It was decided when he was 6 months old that due to his lethal arrhythmias he would under go a radio frequency ablation to burn the extra pathways now rather than at 4 years old when they prefer to do them. His electrophysiologist had not done one on a child this young either. Fortunately the ablation has held & he has not had anymore episodes. We know that there is a chance he could have another pathway that comes out of dormancy but for now we are thankful to have that part behind us.
In 2006 he was granted his MAW. His wish was for Thomas the Tank engine to take him to meet Shamu. Thomas was busy (grin)& not able to take him, but he was happy w/ Amtrak instead & he too left out of Raleigh overnight in a sleeper room then had a one on one meeting with Shamu. Truly a most magical of experiences to say the least.
These children are amazing & while they are enduring way more than anyone should, they also have an amazing tenacity for life. Sam is in our thoughts and prayers that he continues to do well.
If you would like to read more about Xander's story please feel free to visit his carepage at www.carepages.com . His carepage name is Xanderhaveloscarepage (typed as is, no spaces...long one I know). There is a section "About Xander" that shares his story.
Warmest regards & best wishes,
Kim, Tommy, & Xander
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