Not Good News

A little backstory:

Marissa had her vocal chords scoped by Dr. E back when she was still his patient in Oct. 2007.  At that time, he diagnosed her with vocal chord paralysis.  This was pretty devastating for us because he did not seem hopeful about getting her trach out any time soon.  About a month later, we started seeing Dr. P.  Dr. E brought her into his practice because she is a pediatric ENT, thus the reason we started seeing her.  She scoped Marissa at the end of that year and said that her vocal chords were not paralyzed but rather she had vocal chord paresis.  This is some movement, but it is very limited.  She said that this was not the main concern with Marissa's airway, that it was more the tracheomalacia and the smaller lower jaw that needed to resolve.  We moved on from being so concerned about the paresis and went about our lives, thinking we just needed to give her time to resolve these issues on her own.

Today, Marissa was scoped again by Dr. E.  Turns out the squeak we have been hearing is the fact that her vocal chords have very little movement to them.  When she inhales, they only open a little and she has to breathe through not much more than a slit.  Damn.  He said that she will almost certainly need a major reconstructive surgery to be able to get the trach out.  Double Damn.  

He told us she will need one of three possible surgeries: 1)  Arytenoidectomy.  This is essentially where they would surgically remove an arytenoid cartilage so she could breathe without the trach.   2)  Posterior Cricoid Split.  3)  Posterior Laryngotracheoplasty.  (Stupid Blogger formatting!!)  These last two procedures are where they would take cartilage from her rib and graft it into her airway which would somehow make it stable enough to remove the trach.  I haven't done enough research on these to know exactly how this would work, but Dr. E felt pretty confident she will not get the trach out until something is surgically done/reconstructed.

So, Marissa will obviously not be decannulated (trach taken out for good) in the fall.  Dr. E did not seem comfortable doing this kind of surgery on someone as young and small as Marissa. Not that it can't be done, he is just used to doing it on teenagers and adults.  We will now need to see what Dr. P's outlook is on this and if she can do the procedure.  She is, by the way, on bedrest at the hospital.  Things are obviously serious enough that she and the babies need constant monitoring.  She is not expected to be back to work until later this year.  Your continued prayers for her and the babies is appreciated.  

We also need to look at possibly seeing the world renown Dr. C at Cincinnati Children's Hospital. He is the absolute authority on kiddos with problems like Marissa.   Hope and Ava, we might actually get to meet you!  :)  

At this point, the news is so fresh and it stings a lot.  The thought of putting Marissa through another major surgery is overwhelming and discouraging.  Not that we didn't know that this was a possiblity, in the backs of our minds.  Marissa has shown us anything is possible in her short little life, good or bad.  At least there is comfort in finally knowing why she is squeaking.  I think Jeremy and I just need to let it sink in and then we can move on to the planning stage.

Please keep us in your prayers as we process this new information and deal with deciding where to go next.  Thank you all.