Saturday, June 2, 2012

ENT results

Sorry I've been delayed in telling you the results of Abby's surgery.  I worked all day Friday and spent Friday night cleaning up after being away from the house for two days!  So, here are the results:

*  The airway looks good, and it is growing....sloooooowly.  It's just really little.  But, there was no granuloma or scar tissue to take out, so that is good news.

*  The right ear was draining again (after just a few days off of drops), so he took her right tube out and cultured the drainage.  Since something is obviously wrong, he is hoping to figure out what the infection is and treat it once and for all.  The left tube still looked good, so he left it.  While not having a tube could affect her hearing in her right ear, we're hoping that she will be able to compensate with her left until we can give the right some time to heal.

*  Dr. T. manually pulled her jaw forward (Ouch!  Glad she was under!) and saw that it gave Abby's airway a lot more room.  With that, he is now in agreement with our jaw surgeon that a jaw distraction would help her.  They disagreed before, which was a little disconcerting for us.

*  We will be moving ahead with the steps that need to be taken before the distraction can happen. This is kind of crazy, because we were originally told that Abby wasn't stable enough to even be a candidate for distraction.  Look how far she's come!

1.  Get Abby off the vent!!!!!!  This is the first thing that will hopefully happen very soon.

2.  After she's been successfully off of the vent for about a month, we will begin capping her trach during the day.  This is when we put a little plug in her trach so that she is forced to breathe out of her mouth.  We're not sure how she'll do with this, but our ENT seems to think she'll progress very quickly.

3.  Once she is capped successfully during the day, she will go in for a sleep study capped to see if she is having any obstructive sleep apnea (where she stops breathing because her tongue is too big for her small airway).

4.  If the sleep study is clear, we may be able to avoid the distraction.  If it shows apnea, we will go ahead with the distraction to give her airway more room.

The distraction isn't a surgery we take lightly.  It is a major surgery that involves breaking the jaw in two places and implanting metal rods.  There are external screws that we will have to turn for a month to lengthen the jaw, and it is described as very painful.  :(  This is a relatively new surgery, so doctors are unsure of long-term affects to the jaw and teeth.

So why are we even considering it???  Not doing the distraction would mean waiting for Abby's airway to grow enough to maintain proper breathing while she is sleeping.  This could take a really long time and would mean having a trach for an indefinite amount of time.  Having an opening that leads directly to her airway drastically increases Abby's chances for infection, so we want to get the trach out as soon as we can.

That's where we are right now.  Next step:  VENT WEANING!!!  We are going to pulmonology next week and are going to push to move forward with it.  Our ENT is also going to have a "she's ready" conversation with our fabulous pulmonologist...who is sometimes a little overly cautious!

Please pray that our pulmonologist gives us the ok to wean off of the vent, and that Abby can get into MWPH quickly.  (Since it's a "voluntary admission," it's sometimes hard to get in.)  Also pray for wisdom for us as we begin to seriously research the distraction and make a decision about what to do with her airway.

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