Lea Frohn

First post: 8/25/2016 Latest post: 6 hours ago
The daughter of Mike & Amanda (Dicus)Frohn.
Lea was born with what they call Marfan Syndrome, she then was diagnosed with an enlarged aorta and pectus excavatum (large indent in her chest). For the last 14 years Lea has seen many specialists and underwent medical tests including surgeries and then echo's every 3-6 months. 
   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 the outcome they weren't hoping for but now something they have to deal with and wish for the best. Lea's 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).
   Lea has since started developing more issues with her joints all over. The doctors have done more tests which have included 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 already having attached itself to her knee.
   Most recently Lea has developed asthma. She is having a hard time with breathing and normal activity as far as walking up their driveway after getting dropped off from the school bus or climbing the stairs in their home. A few weeks back 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 because it hurt, not knowing what it was. 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. Mandi 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. 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 reconized. At this time Lea's chest indent measures to an "8", leaving only about 1 inch between her chest cavity and spine. Lea is due to undergo surgery on June 21st in Milwaukee at the Childrens Hospital. She will have 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, which will then require immediate attention and have to be repaired at this time. Her recovery time will be a minimum of 7 days in the hospital and 3 months at home. 
  Lea was in the hospital on and off along with homecare after all of her surgeries and procedures, from April 2016 to October 2016.
  Under these circumstances, I had to take a leave of absence to care for Lea. We thought it was going to be an in and out thing in July, for her actual scheduled surgery. It wasn't and my employer wouldn't except a leave of absence anymore. I lost my position but my daughter needed me full time and that's what's important!! 

Thank you to all for your love and support.

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