I have been trying to find an online support group for hemifacial
microsomia and this is the closest I have been able to find. I think
that HM and GS are almost the same. Up until now, my son has not had
any major surgery that required him to stay in the hospital. He had a
tracheostomy 3 weeks ago and I really hate it. He is having mandibular
distraction osteogenesis on september the 1st. The doctor didnt really
prepare me for the tracheostomy very well. He told us it would be so
easy, just would have to suction him maybe once a day and basically go
on as we normally would, except no swimming. That is so not how it is.
We suction ALL the time, Not to mention that we cant just go on as we
normally would. I am now wondering if there are any details I might
want to know about his distraction surgery that the doctors havent
told me. I was told that he would only be in the hospital for 2 or 3
days. Then , when at home we would need to clean the pin sites often
and also tuen the device daily for 3 or 4 weeks. They said that kids
adapt really well and that it doesnt really hurt them since little
ones dont feel pain like we do. I would love to hear from someone who
has been through this procedure or also anyone who has any advice to
offer.