2nd Jaw Surgery -- Plans Keep Changing!!

We were planning to do Faith's next jaw distraction this summer and I actually scheduled it for June 6th, but later that same day I found out my company is shutting down over half of the company and I will be laid off on April 23rd.  We are still waiting to find out how much severance we will get after that, which hopefully will be at least a month or more.  I am fortunate to have a nice amount of notice and I am in a good field where there are open jobs.  Just wish me luck or say a prayer that I'm able to land a new job in a few months before the money from this job runs out!

So, just like the last time I got laid off in 2009, we have decided to move Faith's surgery up to as soon as possible, which they just confirmed this morning will be on March 29th.  That is, it was going to be on March 29th until a few minutes ago.  I just got off the phone with Dr. Gordon who just received Faith's CT scan that we had done last week in prep for the surgery and he doesn't like what he sees from her first distraction.  Basically it worked on her better side, but he isn't happy with how her bad side looks and is more doubtful about the success of doing another distraction.

Just last month Fred and I had a conference call with Dr. Gordon to discuss all the options he gave us and get his input on what he thought was the best approach.  At the time, without seeing her CT scans, he felt the internal distraction is best for cases like hers that are very asymmetric between the left and right sides.  But now that he has seen the scans, he feels that a distraction just isn't going to do enough and he is leaning towards doing the scapula (shoulder blade) graft.  This would be so different from what we were expecting to do.  It would be a much longer surgery (6-12 hours) and she would stay in the hospital for about a week afterwards and then we would go home.  He said we may still need another distraction after that heals (minimum 3 months but we could wait a year or more if we want/need to) to still get the growth needed to get her trach out, although he said his colleague who has been doing these longer has had some patients not need another surgery until they were in their late teens.

It's an awful lot to think about right now and I'm not sure what we are going to do yet.  Dr. Gordon offered to do a video conference with us so he could show us what he is talking about on her CT scan.  I'll try to post an update following that, whenever that will be.

More to come...
Robin