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We are a family of 7 in Boise, ID, with 5 wonderful young boys aged 12, 11, 9, 7, & 4. Gideon is our oldest.
Many of you have heard about Gideon's health problems, supported us in so many ways, and even asked if you can help us financially. We've created this site to help keep you posted and to create a venue for those who wanted to help us face the financial aspects of treating Gideon.
For the past several months Gideon, 10 yrs old, has struggled with even just moving from room to room without getting out of breath. He had lost a great deal of weight and though he gained some back, maintaining weight has been a struggle as he has been in pain, constantly nauseous, and nothing is appetizing. His weight got so bad having a feeding tube put directly into his abdomen has been discussed. He got progressively worse until mid-November when we took him to the ER and weren't sure he would make it. He spent over a week in the hospital and underwent numerous tests including a bronchoscopy that revealed massive amounts of mucus in his lungs due to an infection. The infection is currently being treated with a month-long round of antibiotics. A CT scan showed bronchioestasis which indicates permanent damage to his lungs and a chronic condition. Cystic fibrosis and TB tests were negative so we don't know what is the underlying cause nor his long-term prognosis.
We have had several trips to Cincinnati Children's Hospital to help diagnose the underlying cause, clarify his long-term prognosis, and create a care plan. So far, we don't not have any answers. We will going again in the next few weeks for a more extensive lung biopsy. The suspicion is that his immune system is attacking his lungs for some reason. They will take a about a 1x1x1/4inch section of his lung. Depending upon what they find, we may be looking at several weeks of IV treatments to stop his immune system from attacking his lungs.
We have also met with a lung transplant specialist to explore that possibility if IV treatments don't work. This is a last resort as 5year survival rate is at 50% right now. Not fun to think about, but something we must consider.
Gideon is currently at home with oxygen and equipment to treat his lungs throughout the day. Our hopes are to have him as mobile as possible, strengthening the muscles that have become so weak over his months of illness.
This site gives you the chance to help us cover medical expenses and this trip to Cincinnati.
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Fine Print stuff:
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Andy and Lynn Perkins
Gideon, Isaac, Phineas, Atticus, & Niam