Yesterday we went in for a checkup on Sidney’s right hand. I
try to update every time we go, because I see the hits on my blog of people
from all over the world seeking out information on fibular hemimelia and
complex syndactyly. Today I’m focusing on her hands. Surgery was completed in
January 2010 on her right hand, so this is the hand of most concern. Both hands
are considered complex syndactyly, however two of her three existing fingers on
her right hand were webbed. I’m not sure if this is the politically correct
way, but her fingers were permanently fused together with nails fused making it
a case which is classified as complex.
Waiting for the first surgery. She's so little!
In the first procedure, our hand surgeon released the fused
fingers using a skin graft off her hip. To the outside observer, it seems the surgeon
should be able to simply cut the fingers apart. Sorry, I know that’s graphic,
however it seems somewhat straightforward. Not so. An intricate set of
incisions in a zigzag pattern separated her tiny fingers. The graft assisted in
creating enough skin to make the digits independent of one another. What took
place later was six weeks in a cast and another several weeks in a splint. Both
allowed the skin grafts to heal completely. What was left was dense skin on the
insides of her fingers which were incredibly sensitive to touch. Coupled with
her sensory issues, it made any kind of physical therapy difficult.
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Newly separated fingers
Over the past two years, we have continued visiting our hand
surgeon and other medical specialists in order to make sure the scar tissue and
skin allowed for growth and mobility of her pinkie. With growth and scar
tissue, her pinkie is in a permanently bent position. Over time, this causes
damage to the joint. Complicating factors is an additional bone in the tip of
her pinkie crooking her finger in toward the other. This is part of her hand anomaly
and under normal circumstances; a person doesn’t have this second bone in the
tip of their finger. If you look at her nail on this particular finger, it’s
physically wider on the nail.
However, we know we can’t allow the joint to contract long
enough that we cause permanent damage. Honestly, I’ve had so much anxiety as we’ve
made this decision. There’s a constant balancing act between what’s physically
necessary and cosmetically unnecessary. She hates having a cast. It’s heavy and
uncomfortable, and can I be frank? (Yes Tom, you can be Tom if I can be Frank).
She’s full of piss and vinegar the entire time she has a cast on. She hates it,
and who could blame her? I’m overjoyed the surgeon said only three weeks with
the cast on. I’m holding her to that timeline. We need it off as soon as
possible for everyone involved!
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| Waiting for our appointment last fall. |
So as hard as it is to think of another surgery, I know
there is someone greater than myself orchestrating this entire event. This is
another blog post. Our surgeon has jury duty, so we set it for April 16th
with an alternate date of May 7th. She loves the cabin we go to in
northern WI, and she loves to swim. Both activities we do over summer. It’s an
end goal. More than any trepidation, I’m
thrilled this will be completely healed before she goes back to school in the
fall for kindergarten. I thought we might be into next fall before this took
place. Now I know she will be ready when it’s time.
Okay, I’m off to my busy Saturday!
