Monday, August 1, 2011

Cade's follow-up ENT

Cade had a follow-up ENT appointment this past week.  We were told by the pediatrician that we would need to see the ENT and have a swallow study done before they would remove the g-tube.  Cade's voice seems to be getting louder/stronger to me in a lot of ways.  He is very quiet when he laughs or cries, but when he makes sounds, they sound pretty good.  Because of this, I thought his right vocal cord was compensating more and making more contact with his paralyzed left vocal cord.  Unfortunately, this is not the case.  After being scoped (which is completely uncomfortable and horrible for Cade), the ENT told me that there are no changes.  His right vocal cord does not come all the way over to meet the paralyzed left one which leaves a gap.  This means that he is still at risk for aspiration (food in the lungs) which can lead to aspiration pneumonia.  They don't know if the pneumonia he had in May was due to aspiration or a virus.  I don't really believe it was aspiration because he has been eating completely by mouth since March 23 and has only had pneumonia once.  We will go for a swallow study soon to see how safely food and liquid are passing.  It doesn't seem that we will be removing the g-tube any time soon.  The doctors see it as a precautionary measure.  We'll know more after the swallow study.

I have included a link here for those who are interested.  It explains PDA ligation (the heart surgery both Cade and Camdyn had) and vocal cord paralysis.  A video link shows someone with left vocal cord paralysis, how Cade's vocal cords function.  It also shows how they can inject the left vocal cord to make it bigger so the functioning right vocal cord can get better closure.  They will only do this when Cade is bigger if he needs it for voice and/or for risk of aspiration.  Much later, they can do a surgery to move the left vocal cord over permanently.  They wait to see if anything will change on its own first.  Warning - the video is gross!  I don't think it's so bad, but the former me, the one who was squeamish of anything medical, the one who had not yet had to shove ng tubes down her babies' noses or change out g-tubes, would have definitely thought so.  I hope you all do click on it long enough to find the humor in the music they chose to accompany this procedure.  The Charlie Brown theme song does not seem an appropriate choice of music to play while showing a medical procedure.  Who makes these films anyway?

After leaving the ENT, I called Jim at work to tell him the results.  As I was talking to him, I began to cry.  I  hadn't realized how much I believed that there was improvement, so it was disheartening to hear there was no change.  Brenna was, of course, concerned about Mommy.  Four year olds can ask a lot of "Why's".

Brenna:  Mommy, why were you crying?
Me: Because Mommy is a little bit sad.
B:  Why are you a little bit sad?
M: Because Cade's vocal cords don't work quite right.
B: Why don't they work right?
M: Because he had to get a heart surgery when he was a baby and they messed it up a little.
B: Why did they mess it up a little?
M:  Because he was a very, very tiny baby.
B: Why was he a very, very tiny baby?
M: Because Cade and Camdyn came out of Mommy's tummy really, really early.
B: Why did they come out really, really early?
M:  Well, honey, I just don't know.

Sometimes, I would like to be a 4 year old asking a string of Why's.  I wish I had the answer.  I wish I knew.  I thought I was doing such a great job explaining things to her in a way she could understand, but some things defy understanding, like unexplained pre-term labor.  While I would like to know, I also often ask myself, "Why are we so lucky while others are not?"  Even though, I do get sad at times, I always remember to count my blessings.

When we got to our car after leaving the appointment, I reached down to pull Cade out of the stroller to put him into his car seat.  He looked up at me with those angelic blue eyes, that huge "I love you Mommy" grin crept across his face, and he clearly said, "Mama" as if to tell me everything was going to be okay.  That boy knows how to melt his Mommy's heart in a second!

I ask that you all continue to pray with us for Cade.  God, we pray for healing in Cade's vocal cords.  We pray that he has an ample voice.  We pray that he is able to drink and eat safely, and we pray that you continue to keep all of us healthy.  Amen.


Jessi said...

Amen! Praying with you.

Sarah Pope said...
This comment has been removed by the author.
Sarah Pope said...

So sorry to hear that news! I know how hard it is to fact, hearing your news makes me nervous about going to get Samuel's scope here in a few more months. The thing is....Samuel has a paralyzed vocal chord and does not need a g-tube. I'm surprised they are keeping Cade's in for that reason; especially when Cade takes 100% of food orally. Praying for you guys.
Also, YAY for Camden taking her first steps! It's amazing to see these little babies do so well!