Fluffy, the stuffed teddy bear. [updated 2/11/17]
Normally on my blogs, I like to write about things that will inform others. It can be an interesting research study, some new technology or social media release, or even a current event. Today, I am sharing a frightening event that happened this past week, in the hope that if it helps even one person or family, it will be worth it. Three days after trick-or-treating and one day before Election Day, our 8 1/2-year-old daughter suffered multiple seizures and her heart stopped beating for several seconds before coming out of the episodes. Seconds seemed like forever. Her school acted very quickly to get her to the hospital, Morristown Medical Center in northern New Jersey. While at the hospital, she had many more episodes. She was transferred in the wee hours of the morning from Morristown to New York Presbyterian across the Hudson River near the George Washington Bridge. To see her head roll back and eyes give a strange appearance, then also see the monitor register "0" for the heartbeat, is simply crushing. To hear a Code Blue called for your daughter and see all available medical personnel rushing to her is beyond words. To hear your daughter say out loud that she thinks she is dying while the doctors are doing an emergency procedure is heartbreaking.
The good news is that a week later, she has been moved out of intensive care. The surprising diagnosis was that Lyme disease in rare cases can impact the cardiac and nervous systems. The normal symptoms are external; our daughter's symptoms were internal. Miraculously, the cardiologist we normally take her to at Morristown for a congenital heart defect has done research on the relation of Lyme disease to the heart. In the tests the cardiology teams ordered, she tested positive for Lyme Carditis. A temporary pacemaker was inserted at New York Presbyterian by a co-author of that same research; the pacemaker helped regulate her heart after those rough first two days. We were puzzled when the doctors asked if we go camping (which we don't), but we do have many deer in northwest New Jersey, and the occasional black bear. One other thing that did help, however, was Fluffy, a huge stuffed teddy bear given to our daughter by a nurse on the Morristown team. That little gesture during the toughest moments has meant so much during the recovery.
1/17/16 update - Just about a year after the emergency, my daughter is in excellent health. Joined by my wife and our other daughter, we participated in the Heart Walk run by the American Heart Association. I was asked to say a few words about my daughter's story before the start of the event. Joining us on stage was Fluffy - one little gesture during an emergency that continues to mean so much today.
2/11/17 update - Tomorrow we will join with other families at Morristown's annual Valentine's Day party and educational day. It's a chance for families to learn more about congenital heart disease and meet the wonderful Morristown team. We recently learned that a child whose sister is a patient at Morristown had donated Fluffy. We are excited to pay it forward by donating another teddy bear to help another child recover. In fact, it would be wonderful if every child going to the hospital in an ambulance and every child admitted to the hospital was comforted by a small toy or stuffed animal. The Denville EMS team gave our daughter a small toy to hold when she was rushed to Morristown - again, a little gesture that has meant so much to our family. Happy Valentine's Day to all who played a role in saving our daughter's life!
Normally on my blogs, I like to write about things that will inform others. It can be an interesting research study, some new technology or social media release, or even a current event. Today, I am sharing a frightening event that happened this past week, in the hope that if it helps even one person or family, it will be worth it. Three days after trick-or-treating and one day before Election Day, our 8 1/2-year-old daughter suffered multiple seizures and her heart stopped beating for several seconds before coming out of the episodes. Seconds seemed like forever. Her school acted very quickly to get her to the hospital, Morristown Medical Center in northern New Jersey. While at the hospital, she had many more episodes. She was transferred in the wee hours of the morning from Morristown to New York Presbyterian across the Hudson River near the George Washington Bridge. To see her head roll back and eyes give a strange appearance, then also see the monitor register "0" for the heartbeat, is simply crushing. To hear a Code Blue called for your daughter and see all available medical personnel rushing to her is beyond words. To hear your daughter say out loud that she thinks she is dying while the doctors are doing an emergency procedure is heartbreaking.
The good news is that a week later, she has been moved out of intensive care. The surprising diagnosis was that Lyme disease in rare cases can impact the cardiac and nervous systems. The normal symptoms are external; our daughter's symptoms were internal. Miraculously, the cardiologist we normally take her to at Morristown for a congenital heart defect has done research on the relation of Lyme disease to the heart. In the tests the cardiology teams ordered, she tested positive for Lyme Carditis. A temporary pacemaker was inserted at New York Presbyterian by a co-author of that same research; the pacemaker helped regulate her heart after those rough first two days. We were puzzled when the doctors asked if we go camping (which we don't), but we do have many deer in northwest New Jersey, and the occasional black bear. One other thing that did help, however, was Fluffy, a huge stuffed teddy bear given to our daughter by a nurse on the Morristown team. That little gesture during the toughest moments has meant so much during the recovery.
1/17/16 update - Just about a year after the emergency, my daughter is in excellent health. Joined by my wife and our other daughter, we participated in the Heart Walk run by the American Heart Association. I was asked to say a few words about my daughter's story before the start of the event. Joining us on stage was Fluffy - one little gesture during an emergency that continues to mean so much today.
2/11/17 update - Tomorrow we will join with other families at Morristown's annual Valentine's Day party and educational day. It's a chance for families to learn more about congenital heart disease and meet the wonderful Morristown team. We recently learned that a child whose sister is a patient at Morristown had donated Fluffy. We are excited to pay it forward by donating another teddy bear to help another child recover. In fact, it would be wonderful if every child going to the hospital in an ambulance and every child admitted to the hospital was comforted by a small toy or stuffed animal. The Denville EMS team gave our daughter a small toy to hold when she was rushed to Morristown - again, a little gesture that has meant so much to our family. Happy Valentine's Day to all who played a role in saving our daughter's life!
Fall 2015 Heart Walk
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