Titanium, Turkey and Mashed Potatoes….

Well, it looks like we’re going to having some new titanium to appreciate at
Thanksgiving this year. When the family comes to town to enjoy my husband’s
fantastic turkey, and my momentous mashed potatoes and chocolate mousse malt
ball pie – they’ll also be here to help get my daughter back on her feet as she
recovers from her second hip replacement surgery.

Things have gone downhill fast with Caitlin’s right hip. Just the minimal
activity that middle school presents – traveling back and forth between
classes, P.E. (though modified), homework… has resulted in increased pain and
missed school already. Just three weeks into the school year, Caitlin has four
absences under her belt, and two more days that she came home early. She quit
softball and we’ve been spending extra time in the pool – but still the pain
has kept her up at night and it’s been getting harder and harder to “convince”
her to push through. So, when she suggested it was probably time to go back to
see the surgeon, I knew she was very serious.

The x-rays showed what we expected. No more joint space left – bone on bone,
with necrosis in the femoral head. But, it’s not as bad as it was with the left
hip. We swore we would never let it get that bad again. “I don’t have any magic
up my sleeve”, the doctor said. “You know what the choice is. Is it time?” It’s
time, she said. Pretty heavy stuff from a twelve year old.

We’ve planned the surgery for November 16. Due to district furlough days, the
kids will be getting all of Thanksgiving week off…. So the surgery is the week
before that. We’re banking heavily on Caitlin responding as well as she did the
last time. Surgery on Tuesday – three days in the hospital and home on Friday.
The weekend just to get moving again – and then Thanksgiving week to recover
completely. My mother and father-in-law will be in town for the holiday, as
well as my sister-in-law and her family. My family all lives close and it’s my
turn to do Thanksgiving…..She wants to know if we can go to Disneyland the
weekend after to see the holiday decorations. “Sure”, I say. “As long as you
are up to it!” and I’m quick to add “I’m sure you will be!” – Because she
really needs to believe that for it to have a chance of happening.

Until the surgery, she has been given a “pass” from P.E. Instead of going to
suit up, she will go to the Library where she will be able to do her homework.
She was so thrilled… and I know it’s because she is so tired of fighting to
look normal in P.E. Even though she has it in her 504 plan that she can
self-modify, she hardly ever does because it marks her as different. How I wish
I could make her not care about that… How I wish I could make her understand
that everybody has something they feel marked with…. And she has nothing to be
ashamed of. But she is twelve and I am her mother and that is not possible, no
matter what I try.

I remind her that when the surgery is over, as long as her arthritis remains
well controlled (which it is) – she will go back and be like the other kids. “I
know” she says. “I mean it” I say. I tell her that when her hip is better, with
lots of work at physical therapy, she can learn to run and jog in a way that
looks normal. She will be able to run with all of the other kids – not in an
opposite direction so nobody can tell she doesn’t have to run as far. “I expect
you to participate just like all of the other kids”, I say. She has tears in
her eyes. “I’m sorry, sweetie. Does that scare you?” “No”, she says with a
smile. “It’s all I’ve ever wanted.”

That was the moment I stopped being pissed off about this new turn and started
seeing the bright side again. I still find it totally UNACCPETABLE that my
little girl will have to do this. But I am so grateful that we have the option.
And I am very grateful that this new medication is controlling her arthritis.
And I am hopeful that she is one of the last of her kind….. a child so damaged
by arthritis that it is necessary to replace her joints with titanium.

Caitlin’s mood has been up since this was all determined last Wednesday. The
doctor gave her some crutches to get around school, and they’ve been sitting
unused in the nurse’s office everyday, just in case. They also increased her
dose of vicodin now – to a dose that had to be written on a triplicate order
slip. But the old dose wasn’t touching the pain – she would toss and turn and
moan – and we would carry her to the bathroom (not as easy as when she was
five…). I marvel at what her pain tolerance must be. I’ve only ever been on
vicodin twice – for a dislocated shoulder, and for a third degree burn . It
made me sick both times. She has only needed it one or two nights over the past
week and she has been sleeping better…. She knows how important good sleep is
for pain management. And amazingly, she is not showing anxiety about the
surgery. She seems to be concerned with what we can sneak in to replace the
hospital food and whether or not she can request all red jello

So, here we go again…. full steam ahead. Here’s to having so much to really
be thankful for this year……

roast turkey

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This entry was posted in Actemra - Tocilizumab, Family, Pain, Surgery. Bookmark the permalink.

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