The dreaded surgery post.

So, surgery in a month. For whatever reason, i really had thought this would get easier with time. Well, in some ways it has. My packing skills are pretty great (as long as everything gets to the car, oops!). But, other than that, I'm beyond tired of this. (Of course, i'm beyond tired, but that's baby number 2's fault.) Seeing your child miserable is... miserable. Handing him over to never really being able to know what's going to happen is... miserable. We trust our docs, but mistakes happen. My son has a messy, ugly disease that only means more unexpected things happen.

This surgery is... a little out there. We have no guarantee it will solve our problem, but it will permanently cause him damage, whether it helps or not. Try to swallow that (no pun intended). That being said, we are between a rock and a hard place. Right now, if something were to happen to his trach and we couldn't get it in again (not totally unheard of), they have no access to his upper airway to intubate (tube down the throat) and that's really scary. His mouth opens about 1 cm. Even if his mouth were to open enough, his upper airway is at least partially obstructed by mass, so if they could get a tube down, it wouldn't be much of one. They can't get to the mass to try to remove it, because they can't get tools in to do anything (i.e. trach never comes out). So, the doctors thin based on his Mri that a muscle in his mouth is so enveloped in \LM that it isn't moving, it is permanently clenched. Well, happens that the muscle is a pretty darn important one.. the strongest muscle you have to chew your food. (Clench your teeth, it's the muscle that you feel near the front of your ear). Really, the muscle isn't really mostly there anyway. The theory is that it never formed correctly and has his mouth has gotten bigger, it hasn't stretched... So we have been progressively losing on this for awhile now. So, the answer is to go in on his old incision and go up through his cheek and remove the muscle. And hope that it helps. And that what it hurts can be overcome. We're told the other side will eventually learn to compensate, but we really hope he can close his mouth after surgery... if he can't, it will be devastating. He has MORE than enough going on in that little mouth of his... We can't predict how it'll affect his eating... Last big surgery we spent 6 months to get to where we were before surgery... So, starting all over again.

Not to say all this to whine, only to say it stinks to have to make decisions like this one (not to mention going through with it!). Yes, things could be worse, but that doesn't mean it's not awful anyway. Apparently i'm learning you can be thankful for what you have, and angry/upset/frustrated at the same time. A good lesson.


This post brought to you by a super huge nap. :)