Monday, August 30, 2010

Hallelujah!

We got better news about Cade's diagnosis.  It is only left vocal cord paralysis and not bilateral vocal cord praralysis.  Funny thing to be excited about a diagnosis of left vocal cord paralysis but when you've been told it may be bilateral and require a tracheotomy for life, you celebrate that at least one side is working.  That's what it's like to have micro-preemies.  You celebrate the strangest things with the precursor, "well at least it's not . . ."  You say, "A grade II head bleed isn't that bad because at least it's not a grade III or IV."  You think, "Well if he can't hear, at least he can see."  So many times throughout this journey we have said the words "at least it's not".  We are thrilled that it is only left vocal cord paralysis. 

So what does that mean?  Of course, we have to "wait and see" just like we have had to do for months now.  He will do another swallow study in 4 weeks.  This time he will go to Dell Children's Hospital to do that, and they will watch to see where the liquid is going.  They will thicken it to different consistencies to hopefully find a consistency that he can swallow safely.  The problem is that his vocal cords do not close to protect his airway because only the right side is working.  This means that liquied can easily pass between the vocal cords and go into his lungs.  The ENT explained that often times the right vocal cord will work harder to compensate for the left one.  We are hoping this happens and that they can find a consistency that works for him.

As he grows, his voice can become louder.  I have noticed in the last few days that his cry is becoming more audible.  His voice will most likely be breathy and raspy because air will escape between the vocal cords when he speaks.  Fortunately, there are more treatments available for unilateral VCP than bilateral VCP.  They won't do any treatments to improve voice until he is much older to see what his body will do on its own first. 

I am just thrilled that he will not need a tracheotomy.  I feel like a raspy voice isn't a bad trade off considering all the potential problems we were lucky enough to avoid.  The left VCP was a result of the PDA heart surgery he had when he was two weeks old.  It is a common problem with this surgery; however, the surgery was necessary to save his life.  The nerve that moves the vocal cord wraps around the heart, and I suppose that when you are performing surgery on a 1 1/2 pound baby with a tiny heart, damage to this nerve is hard to avoid.  They told us about this risk when we signed off on the surgery, but there really was no choice but to have the surgery.  He would not have survived without it.  Camdyn also had the surgery, but her nerve was not damaged.

When I was driving Cade to the ENT today, the song "Hope Now" came on the radio.  I just felt God was sending me a message to keep faith and trust in Him.  I felt much better after hearing that knowing that He is going to take care of my sweet babies.  We just feel so blessed to have both of our babies home with us.  Wow, what a story they will have to tell!

3 comments:

Donna Mossholder said...

just read both posts...yea for you guys. Yup know the whole, at least he isnt ________ fill in the blank. We are still working on too many of them right now though, wish we could be somewhere more stable durnit!!!! You are so sweet to post my blog lol. Yours is so much happier though, I like reading yours better lol. Questas baby is on cpap yipee, and I think she is doing a ton better. So happy for her. She got to hold her baby for the first time in 2 months since she was born. Wowwwie big moment for her. Talk soon(my mom is saving the day yet again and coming out for a whole month, am so grateful, wish we could just get our kiddo home, may be looking at a whole year ugh, but thats Thurston for ya) Take care...by the way am thinking about enrolling Viola in a dance clas...hmmmmm wonder where I could do that.......is she too young? love your way

Michelle said...

Donna - I would love to have Viola take class. You could probably use a break coming to dance class to watch her too. You would enjoy it. We start at 2 years old, so she would be great! Best wishes to you guys. Hope Thurston keeps improving.

agcat01 said...

That is amazing news. What a beautiful and blessed family. Thanks for continuing to update and lets us all know how y'all are doing.