Why my son is in a wheelchair. Again.

Tuesday, March 11, 2014

I'm getting lots and lots of questions from people wondering what's going on with my 8 year old. So here's the synopsis. Last year, he slipped on some gravel and landed on the side of his leg. Either the fall was cause by or resulted in a spiral fracture of his femur. His femur was weak (he had a quarter sized cavity) due to a nonossifying fibroma. You can read a more detailed account here. And here.

We spent a few days in the hospital and the doctor put in a plate. We spent 6 weeks in a wheelchair/walker, after which my son gradually moved up to more strenuous activities. Over the last year, we've monitored his leg with xrays. It appeared to have healed, and because his leg is still growing, they wanted to take the plate out.

That was the surgery he had on Thursday. Only when they took the plate out, the bone around one of the screw holes collapsed (the doctor said the bone was only as thick as egg shell). He stuck a scope in the hole and found that the fibroma had not healed at all (that's the black spot shaped kinda like a #9. The grey spade-shaped thing is the tumor "track" where the tumor has migrated with the new growth).

Feeling that the bone was diseased, and therefore not healing, the doctor scraped out the bone around the fibroma, making the cavity silver dollar sized. In addition to the cavity, my son also has a hole on the outside of the bone from the collapsed screw hole (the doctor said the hole is about the size of the tip of his finger).

What this boils down to is his femur is extremely fragile-to the point that merely putting weight on it could break it. He's in a wheelchair and walker. The doctor did not put the plate back in (though he considered it), because he's hoping the bone will heal and we won't have to do another major surgery (the incision they have to make is 9 inches long and requires an overnight stay). His incision is healing, so his pain is lessening. It's really hard to get him to stay down when he's feeling close to normal.

It's also really hard because we live in a four level multilevel, making the wheelchair practically useless in our house. He crawls a lot, and we haul the walker up and down stairs for him. Their are only bathrooms on the topmost and bottommost floors. He also has a few additional medical conditions that complicate things.

If I could sell my house tomorrow, we would be gone.

Honestly, my son is probably holding up better than I am. I went into the surgery thinking we would have crutches for five days and a few restrictions on sports and jumping. I came out with a son in a wheelchair and no idea when or if his leg will heal.

So we're playing the waiting game. And I hate it.

I'm not sure how I'm going to get my next book out either. The pacing of my life was already to the point where I could barely manage it. And now this. Something has to go, and I've already pared down my life about as far as I can take it.

I've stopped doing my hair. Or wearing makeup. And I probably won't make my deadline.

I'll be completely honest, the day of and after his surgery were some of the worst of my life. I can't imagine how parents of children with scarier conditions deal with it. My husband got me through it. He kept doing silly things to make me laugh--and he never does silly things.

Last year, our deductible was $4,000. This year, our max out of pocket is $10,000. Thank you, Obama (you don't want to get me started on Obama, trust me).

Anyway, I'm doing better now, I still have my good and bad days--today was one of the bad ones.  My son is enjoying all the attention, though he misses playing with his friends--I think he's kind of lonely. And very bored.


  1. I'm so sorry, Amber. I know we don't even know each other that well, but I'm sending you all kinds of hugs. And prayers. I can relate...and that's all I want to say here. But know that there is a whole world of empathy coming your way!

  1. Cashelle said...:

    I'm so sorry! I hope his leg heals quickly. That is so scary. Miss all of you guys.

  1. My heart hurts for you all. Prayers are definitely being offered for your family. Thank you for sharing your struggles so openly and honestly.

  1. Shantal said...:

    I can't imagine how hard this would be. I am proud of you for being so strong in the face of something that must make you want to scream and cry, scream and cry. Stay tough! Hope your boy heals well and soon!

  1. Focus on your son and family. The book can wait. Sorry for all the complications and I'll pray for you. Like Laura said thanks for sharing.

  1. LC Piper said...:

    Wow, just wow. I feel for you. Those photos give me spine chills.
    Your son and family will be in our prayers.
    The good news is that you don't need to know what to do. Just keep working and have faith. It will come along as you live righteously and receive your blessings.
    It's the darkest moments in our life's that we find our strengths. You all will get through this in time and be better for it.
    Let me know if there is anything I can do.
    When you've done all that you can, but it's not enough to get the job done, it's only because you're not leaning heavily enough on a friend.

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