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Joshua's Increased Healthcare Needs

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February of 2014 Joshua had a spontaneous fracture of his right femur secondary to a benign bone tumor.  He went into traction for 24 hours while waiting for a compression screw to arrive from another children's hospital to perform surgery to repair the damage.  The bone was extremely hollowed out, and the damage was pretty extensive.  After 5 weeks in a spica cast, Joshua spent almost 4 months in and out of a wheelchair or walking with a walker. 

Truth be told, Joshua was more upset about missing his baseball season then what he was going through.  During this time the compression screw prematurely compressed, his leg partially collapsed, and a screw was knocked loose.  This complication caused a leg length discrepancy as well as the need for a surgery to remove the free floating screw in August of 2014.  Joshua spent the next 2 years in and out of doctors’ offices and having dozens of x-rays to ensure proper bone growth.  Although he was eventually allowed to walk again, he spent most of the time altering between a wheelchair and a walker. 

When we finally had positive news in regards to bone healing, we were hit with the next struggle.  Joshua’s leg length discrepancy was significant enough it required intervention.  The bone scan he had done identified a bigger problem, his bone age was extremely advanced putting it 4.5 years beyond his actual age.  This sent us spiraling into a whole new medical challenge, added in doctors and exams, testing, and infusions.  He was diagnosed with precocious puberty in May of 2016.  He went in for the surgery to halt his growth hormone and to place screws in his growth plate in his left femur in the same week at the end of June 2016. 

The implant was successful and the knee caused no issues, so we were beyond excited to finally be moving in the right direction. 

The pain in Joshua’s right femur came back, and as the months went on it got worse.  Labor Day weekend 2016 Joshua’s leg blew up, and showed every sign of infection.  I scheduled an emergency appointment with his orthopedic surgeon, and the ultrasound confirmed a massive infection had built up in his right femur and the surrounding tissue.  He was immediately admitted into the hospital and scheduled for surgery the following morning.  That Saturday was the first of 3 surgeries he would have that week.  Joshua endured pain, blood transfusions, multiple surgeries, and he did it all so incredibly strong.  He focused on the bigger things in life, like not missing his beloved Texans play their first game of the season. After 11 days he was discharged from the hospital and put on long term antibiotics.  Everything seemed to be going well, and the leg appeared to be healing.  On New Year’s Eve, Joshua started to experience pain in the leg again.  I, again, called and scheduled to first appointment available.  At that appointment he had an MRI which showed that the infection had abscessed again.  Once again, he was immediately admitted and went in for surgery the next morning.  Upon release, we followed up with Infectious Disease and the Orthopedic Surgeon and were hopeful that we could prevent further surgeries despite the pain we could not seem to get rid of. He saw several other doctors and had tests to rule out other possibilities. He was officially diagnosed with Chronic Reoccurring Osteomyelitis.   

 

On Wednesday, February 8th, exactly three years from the day this nightmare began, Joshua’s doctor ordered another MRI.  That MRI showed that not only has his femur re-abscessed, but it is worse.  On Tuesday, February 14th he will go in for the first of a series of 3 surgeries.  They expect a short hospital stay followed by discharge with a PICC line and home healthcare for a minimum of 6-8 weeks.  In three weeks he will go back in for another surgery, and again 3 weeks after that.  The surgeries will be extensive, and he will be at higher risk of fracture.  That itself would cause so many other complications.

 

The long and the short of it:

We are still trying to figure out what insurance will or will not cover, as well as medical equipment we will need to get through the next few months.  While Josh and I are extremely grateful for our wonderful insurance, between the deductible, still trying to meet our max out of pocket, and already having accrued 3 years of medical debt, we are struggling.  We need to come up with the estimated costs of the home healthcare that Joshua will need in the following months, as well as to replace his wheelchair, and any other medical equipment he might need.  All funds raised will be going to medical expenses, both future and past. 

 

We begin the next phase of treatment on February 14th, and we can use all the help we can get to give this kid his one true wish: To be normal.  Normal is overrated, but to our son it is what he so longs to achieve.  Joshua has been THE STRONGEST person I have ever met, but he misses the carefree days when he could play baseball and run around with all the other kids.  While baseball is but a distant memory he will most likely never relive, there is so much he wants to do with his life.  Please consider helping us in our fight for our son and his ability to walk. 

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    Organizer

    Kristen Hughes
    Organizer
    Spring, TX

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