PICU- your observations please

Let me see if I understand your post correctly. You're looking for reassurance and not advice. Your daughter has probable unilateral left coronal craniosynostosis. That means that the left coronal suture in her skull has fused prematurely causing a gradually worsening cranial asymmetry and compression of the structures of the left brain and its associated complications. The surgery is called cranial vault remodelling. It's a very long, delicate surgery, as you already know. Our neuro and plastics surgeons do a handful of these every year with minimal complications and extremely good outcomes. The kids generally need PICU monitoring for a day or two to ensure that their facial edema doesn't compromise their airways and to ensure that their neurological function remains normal. I can't remember one that has gone badly. Rest assured, in the right hands your daughter will do very well and no one will ever be able to tell she'd had major surgery as an infant. Please feel free to return and give us an update.

We recover these kiddos in the PICU because of the amount of edema they have post op- docs want to make sure they can maintain their airway.I'm sure your docs have prepaired you for what to expect- just be prepaired for a TON of swelling in the face and head- like 2-3 times your child's normal size. It goes away pretty quickly. We used to always keep them intubated overnight just to manage pain and protect that airway. However, I think the "lastest and greatest" reccommends early extubation. So now thay are coming back extubated from the OR. From my experience, this is a pretty painful post op- but if there is one thing we do best in the PICU- its pain management!
From my experience, these kids to very well- like Jan said- I haven't seen any problems in my career with this one either. We usually have them for 1 maybe 2 days, then off to the floor(not sure how long they stay).
I hope hearing from a few of us who take care of these little ones post op helps a little. It is scary to have a child in the hospital for any reason. Please know that I'll be thinking about your little one.... Please let us know how things go!

"what to do" about having the procedure??? Or where/when/who to perform the procedure?? What don't you agree about... if you don't mind me asking??