Yeah, I know I'm pulling an old thread up to the top again...BUT:
CMA posted this recently...and thought I'd share with ya'll.....
"..the stars at night are big and bright * * * * Deep in the HEART of Texas...
Everybody knows everything is bigger in Texas! Unless, of course, you are talking about two and a half year old Tracy Anne or her tiny little heart.
Tracy was born November 18, 2002 with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). The left side of her heart did not develop in a normal manner. Tracy’s left ventricle, the main pumping chamber of the heart, was severely underdeveloped, and her mitral and aortic valve, aorta, and left pulmonary artery were much smaller than normal. She basically has half of a heart.
Until a few years ago, this condition was fatal within a few days or weeks of birth. Although still not correctable, modern advancements in medicine have begun to better address patients with HLHS, via a heart transplant, or a series of three open heart surgeries known as a staged palliation. These surgeries effectively make the heart of an HLHS patient two-chambered instead of the four chambers of a normal heart.
Immediately after birth%2, Tracy was put into the Neo-natal Intensive Care Unit, where she received oxygen while waiting for surgery. She underwent her first open heart surgery, a “Norwood Procedure”, when she was 3 days old. In this surgery, her aorta was reconstructed and enlarged, and connected via a shunt to her right ventricle, making the right ventricle the main pumping chamber. Tracy was the first scheduled patient at Children’s Medical Center in Dallas to undergo a newly developed variation of this procedure, called a Sano modification. The Sano modification has since become the norm in Norwood Operations. Tracy was able to come home at 25 days old.
In preparation for the next stage of her palliation surgeries, Tracy underwent a heart catheterization when she was about 18 weeks old, the results of which were good. A few weeks later, she suddenly turned blue and was rushed back to Children’s. The next day, as she turned 5 months old, she had her second open heart surgery - a Bi-Directional Glenn. In the Glenn surgery, blood from the upper half of the body is diverted to the lungs to provide better oxygenation and to reduce the pumping effort required by the heart. She was in the hospital about 3 weeks following her Glenn.
On June 1, 2005, Tracy underwent another heart catheterization in preparation for the third open heart surgery in the staged palliation, a “Fontan”. In the Fontan surgery, a tunnel is formed in and around the heart to direct blood from the lower part of the body to the lungs. A hole, called a “fenestration” is also made to allow any excessive pressure on the lungs to be relieved and for blood to flow back into the heart.
Tracy had her Fontan surgery on June 16, 2005 when she was about two and a half years old. Doctors also did some work to enlarge her left pulmonary artery, which had always been small. Tracy also underwent a chemical pleurodisis about two weeks after her Fontan to address some excessive drainage from one of her two chest tubes. A third chest tube was inserted in her side immediately following the pleurodisis because air had surrounded and compressed her right lung, not allowing it to expand. All three tubes were removed a few days later. She was again in the hospital for about 3 weeks, and was able to come home on Independence Day - July 4th, 2005.
Staged palliation for HLHS is one of the greatest achievements of congenital heart surgery in the '80's and ‘90’s. Prior to it’s development, HLHS was a uniformly fatal disease within days or weeks. Long term effects are still not known, the oldest HLHS survivor is only in their early 20’s, but Tracy’s heart will probably wear out much faster than a normal heart, and she will most likely require a heart transplant at some point in the future. Tracy’s surgeries were not a "cure" for her HLHS, but rather, a repair that will allow her to live longer than she would have otherwise. Hopefully one day, with more research and medical advancement, there will be a better, more permanent cure for those afflicted with HLHS.
Tracy regularly goes back for checkups, and is on daily heart medications. Other than a possible heart catheterization to close up two fenestrations created in her heart during the Fontan surgery, there are no more near-term surgeries planned.
Tracy’s checkups have been excellent since her last surgery. When she gets tired, she does get tired very suddenly, which is normal for HLHS patients. She is a happy little girl, who loves to sing, play, and dance. Like a lot of congenital heart patients, Tracy is rather small for her age. To look at Tracy today, you would never know the trauma she has indured in her short 2 1/2 years. You would only notice a fading scar and a tiny 20 pound girl with a magnetic personality. You might also notice big, blue eyes....almost as big as Texas!"
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