Tuesday, June 21, 2011

Headed to DC...

for an ENT appointment.

Hopefully, if things go the way I want them to, she will come home in official "capping" status.

I guess I shouldn't make it sound so progressive.  Capping (sealing off the trach, meaning that she will breathe both IN and OUT through her mouth and nose) usually is a precursor to decannulation (removal of the trach).  However, I do not believe that is the case here.

I'm thinking that she will need at least one more jaw surgery for that to happen.  And since we haven't even thought about it - it is quite a ways down the road.

However, that doesn't mean that we can't do everything in our power to get her to function as normally as possible.  And that is my ultimate goal.

So, he's going to cap her and see how she does.  I am hoping that she does as well as I believe she can.  And in the back of my mind, in the middle of my heart, I am secretly hoping that the results will pleasantly surprise us and mean she could be decanned even without another jaw surgery.

I suppose you never give up hope for that sort of thing.

So, I'll let you know how it goes.  Keep your fingers crossed!



Heather said...

wow! such a huge day. good luck today and I hope Harlie kicks some butt as usual. can't wait to hear the result!

Susan said...

Good luck Christy! In our secret heart of hearts we always have the hope even when our brains are skeptical. I hope at least you get to come home with a cap to play with. Please update soon.

Tracy said...

Will you be at the VACTERL Conference this weekend(25th-26th)? Its in DC at the Double Tree Hotel across from the Pentegon. Its a wonderful time.


Christy said...

Tracy - no we are not going to the conference. I haven't really been able to seek out much support in the VACTERL or Goldenhar Syndrome networks yet. But I know I need to start making the time for that. I'm getting into issues that I could use some information from those experienced. If only there were more hours in the day!

Have fun!