Paisley was born with Hypoplastic Left Heart Syndrome (HLHS) which is a rare congenital heart defect (CHD). With this CHD, the left side of the heart is severely underdeveloped hindering it’s ability to pump oxygenated blood back out into the body. There is no known cure for this heart defect but there is a series of 3 surgeries that help to re-route the blood flow and mend the heart function temporarily. Paisley had her first surgery (the Norwood) at when she was six days old and was in the hospital for 1-month due to numerous complications including a GI bleed, a shunt clot (which caused her to code), and feeding difficulties. Between her first and second surgery, Paisley was in and out of the hospital due to feeding intolerance and a weak immune system. At five and a half months old, she began to show a different breathing pattern and was life-flighted to the hospital where it was revealed that her aorta had narrowed causing other difficulties for her already weakened heart. Her second open heart surgery (the Glenn) occurred a couple weeks later and Paisley was in recovery for another month. Her body functioned better after this surgery but she still had difficulty with feeding resulting in an NG tube until she was 11 months old, reduced oxygen saturations causing respiratory concerns, and severely decreased muscle tone with subsequent physical delays. Paisley has received physical therapy services and intermittent occupational therapy services her entire life. She wears ankle-foot orthotics to help compensate for her hypermobility and weak muscle tone. Paisley is followed by a wonderful cardiologist at Sibley Heart Center where she gets routine visits, EKGs, and echocardiograms. She is on daily medicines to help her heart and GI concerns. Her immune system continues to be weakened and her body has to fight extremely hard when she does become sick, often resulting in hospitalization. Since her second surgery, Paisley’s oxygen and activity levels have slowly decreased with the most significant decline taking place in the last 6 months. Where as most people function with oxygen saturations around 98-100%, Paisley is currently functioning at 76-79%. Her lips and fingers turn blue, her skin pale, and her breathing very labored with the slightest bit of activity. These are all signs that her body is in need of her third surgery (the Fontan) which she will have sometime this summer. This surgery will hopefully help her body to grow into her teenage and possibly even adult years. However, with this surgery also comes lots of risks for her future as well, including risks for damaging other organs, especially the kidneys and lungs. And as this is not a cure, a heart transplant is always a possibility. We know that our little heart warrior is a fighter and we want to sincerely thank every person who continues to help us cheer her on in her fight again CHD!
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