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8/25/2016 Latest post:
Lea was born with what they call Marfan Syndrome, at 2 months old she then was diagnosed with an enlarged aorta and pectus excavatum (large indent in her chest) and connective tissue disease. For the last 15 years Lea has seen many specialists and underwent medical tests including surgeries and then echo's every 3-6 months. Since Lea was just a baby, she has went through many illnesses, infections and it has always kicked her butt... Lingering on or just getting more sick than others. Few of the things Lea has gone through: In 4th grade, Lea underwent a surgery for her elbow, her radius bone was three times the size it should have been. It was crushing her other bones in her elbow and then one day her elbow locked up. The doctors were able to repair this by doing bone graphing and adding titanium hooks to hold her elbow together. She had returned to the specialist only to find out that her bone grew back even larger but because she still has mobility and no pain they do not want to do another procedure at this time, due to it causing more damage. The specialist said she will eventually have to have a fake joint(elbow). Summer of 2015 Lea was mauled over by a horse breaking her right clavicle (collar bone) she needed surgery but they refused to do it because she was at such high risk of infection. She was locked in an 5 harness upper body brace for 8 weeks and never healed properly but her bones did line up close enough and has a lot of calcium build up now. Lea just keeps developing more issues with her body all over. The doctors have done more tests which have included: labs x-ray's, MRI's and CT scans. They have discovered that Lea has Plica Syndrome. This is where her joints lock up and get inflammed, causing tissue to attach itself to her bones/joints. It did to her knee as it hurts her a lot. It gets big, inflamed and gives out on her. Her feet have become worse and now they lock up all the time including her toes. Her fingers have started doing the same thing. Questions about surgery as it's needed to correct this but again because of her illness they will not heal correctly and she would have to keep having it done, not something that is acceptable. She does have orthodic foot braces, nothing they can do for her fingers. Jan of 2015 Lea developed asthma. Her fainting spells went from once or twice a week to, two or three times a day. She was having a hard time with breathing and normal activity as far as walking up our driveway after getting dropped off from the school bus or climbing the stairs in our home. In April 2016 Lea complained of chest and back pain, not feeling well, chronic pain, she described it as just feeling weird. She would just hold her chest and cry because it hurt her so bad and not knowing what it was, didn't help. With a trip to the doctor, her Cardiologist ran her normal test of EKG and echo's. At this moment they said she was okay. That same night Lea's condition had worsened. With another trip to the hospital the doctors said her chest was inflammed and there was nothing they could do and put her on meds to help with the pain. She stayed home the following day from school, feeling very sick. As the day went on she had gotten even worse. I then took her to St. Joseph's Hospital in Chippewa Falls and within minutes they hooked Lea up to heart monitors. She had extremely low blood pressure and a pulse of 30. It was discovered she had Bigeminy as well as a CT scan showing her pectus excavatum was pushing on her lungs and heart, she was not getting the proper blood flow to her heart or air to her lungs. They then immediately transferred and admitted Lea to the hospital in Marshfield. At first the doctors talked about putting in a pacemaker, then a surgeon from Milwaukee Childrens Hospital looked over Lea's condition and told the family that Lea needed surgery to repair this because it will not go away, it will only continue to get worse. Lea has been over and beyond medical attention for this for quite some time now, but not until recently was the seriousness of this recognized. At this time Lea's chest indent measures to an "8", leaving only about 1 inch between her chest cavity and spine. After a week hospital stay in April, Lea underwent back to back surgeries and procedures on July 12-21st in Milwaukee at the Childrens Hospital. She had a metal rod put in her chest to push her chest cavity outward and will stay in place for approximately 2 1/2 to 3 years, allowing her lungs and heart the room they need. Surgeons will then focus on her heart surgery when she is healed and the bar is removed, unless her aorta tears(disects) during this surgery or before 3 years, which will then require immediate attention and have to be repaired at this time. Many set backs in July, including very severe allergic reactions and her body not responding to meds and antibiotics. Then in August 2016 Lea was again in the hospital in Milwaukee. With double staph infection, fluid in her lungs and around her heart that was infected, double pneumonia and a collapsed lung. Lea spent many days in the hospital, half in ICU. They pulled over 2 liters of fluid from her lungs. Lea was in the hospital from August 18-31st. She had a pick line put in that gave her, her IV antibiotics. This stayed in place until homecare was done on October 1, 2016. She was then switched to oral until January 28th, 2017. Now Feb 2017, we find out Lea's infection is back or never left and that her bar moved upward again. Back to Milwaukee we go on March 6th and 7th.