Hi, my name is Kim and I'm new to the group. My daughter is 6 years
old and was born with Goldenhar's syndrome. At the age of 5 she had
jaw distraction. The first surgery she was in the hospital for 3 days,
mainly because she refused to eat or drink. With the removal of the
device she was just in one night.
As for pain, I think it is probably child specific. My daughter didn't
have any pain for the first 3 weeks. However, as the bone was
streched the last 3 weeks she was in a lot of pain. She was on
oxycodone and motrin around the clock. They had to increase her pain
meds multiple times. Towards the end we were sleeping with her
because she cried all night long. We would roll her off her distraction
side and she would stop crying for a little.
The biggest problem we encountered was nutrition. apparently
many kids jaws get locked in the closed postion. She was unable to
eat any solid foods. She started losing weight so we finally put her on
boost. She was on a boost diet for 3 months. I would recommend a
pre-op nutrition consult!
The device does need to be turned 3 times a day so either you or
your husband have to be available to turn it during the day. The pins
need to be cleaned 2 times a day. The drainage can really build up as
the device remains in. We did a daily bath and soaked her pins and
then the drainage would come right off without hurting her.
I would also recommend a child psycologist to prepare for the
surgery. We did not do this for the first surgery and my daughter was
very angry. Her face was very swollen. She looked like she went 3
rounds with Rocky. The second time we met the child psycholgist and
discussed how she would look, what to expect, did a pre-op tour...
This went much smoother.
One complication which we did not experience, but another family we
knew did was facial nerve paralysis with removal of the distraction
device. Her daughter required eye drops to keep the eye moist and the
paralysis resolved over time.
I don't know if at some point you will be doing ear reconstruction but
I have found a wonderful site on yahoo- the microtia support group. It
helps with all the different options for reconstruction.
hope this helps and good luck!,
Kim( mom to Kaylee age 6)