Jaw Distraction

Jack had his jaw distraction surgery on Tuesday.  He's doing REALLY well considering he had a pretty major surgery.  He has a huge bruise starting at his incision sites and spreading down his neck - it looks pretty painful.  This just came out a day or two ago and seems to still be getting worse at this point.  I'm sure it will turn around within a few days and begin to heal, but it shows how much he must be hurting.  The thing is, he doesn't seem to be showing much pain - he's pretty much his normal self.  Maybe a little more cranky than normal, but running around, jumping and climbing like usual. 

During the surgery when they placed the pins they gained 2 mm of space, so they told us to wait until tomorrow to do the first turn.  We'll go into the office to have them do it the first time and get instructions.  We'll turn the pins 1 mm per day for 30 days to get a total of 30 mm of growth.  He's already breathing so much better at night just from the 2 mm - we can't even hear him, he breathes so effortlessly.  His sats have been anywhere from 98 to 100 all night long, so we've actually started leaving the pulse oximeter off at night!  First time since he came home from the NICU as a baby!

And, surprisingly he's actually eating better too.  The first few days he didn't eat much of anything, but now he's doing really well.  He's not allowed to chew on his healing jaw and has to be on a pureed diet for the next 6 weeks, but it's going so much better than we had expected.  For breakfast he's eating pureed oatmeal, lunch is pureed chicken salad, dinner is guacamole, and snacks are chocolate pudding, pureed sweet potatoes, or yogurt.  I just fed him a huge bowl of guacamole and he ate it all in about 30 minutes.  Normally that would have taked him 3 or 4 hours.  The only thing he's not doing is drinking his milk.  I think it hurts him to put his lips around the straw and create enough suction to get the milk up through the straw.  We've been trying lots of different things to get his milk into him, but so far we're not having much luck.  We can get him to drink water, so he's not at risk for dehydration.  But he's missing a lot of calories without his milk.


Here are some pictures from today: