Appointment week- ready for answers

So, I have to ask myself, "Why in the world would I schedule 3, YES 3, appointments in one week???"  I have absolutely no idea what I was thinking but I will NEVER EVER, EVER AGAIN no I’m not singing Taylor Swift J) schedule myself into a crazy person.

Below is a breakdown of the 3 appointments and what we learned at each one.

ENT- we learned that Chance’s left vocal cord is in fact paralyzed from his PDA surgery he had to close his heart valve when he was 3 weeks old.  The ENT doc put a flexiscope down his nose.  I was holding C who was crying bloody murder. Joc and I watched on a TV screen and we could see that his left vocal cord was not closing like the right one was. The doctor said that there is a good chance his right vocal cord will move over completely to compensate for the left.  The doctor could see that his right was already slightly moving over.  He did mention though that babies who were born with vocal cord damage have a higher rate of the right cord moving over completely than the damaged being sustained through surgery. 

We knew there must’ve been damage because Chance’s cry is very hoarse/quiet so I’m glad to finally know for sure.  

Down the road, his voice may be raspy and during growth spurts and puberty, he may experience shortness of breath.  We go back in 2 months to see if his right cord moved over anymore. 

During the scope, the doctor could tell the area around the vocal cords was slightly swollen which could indicate aspiration and/or reflux.  He said it wasn’t that bad though.  Some cases, he can’t even discern the two vocal cords because they’re so swollen.  

When we were signing the consent for the PDA surgery, vocal cord paralysis was known complication to the surgery.  The more I read about it, it is more common in preemies who were less than 1000 grams and who had BPD (bronchopulmonary dysplasia/chronic lung disease).  The pda is located right next to the left vocal cord nerve and when you’re working with a tiny baby and an even tinier space, it unfortunately can happen.

So, yeah, we weren’t too happy to hear that news.  But, I have to keep in mind that we CAN deal with it.  The Lord has protected Chance through so much so if this is one of the only things we have to deal with, so be it.

You can read more about the surgery and vocal cord damage here

Eye doctor- OK, here’s some AWESOME news!!!!  Chance doesn’t have to go back to see the eye doctor and get those awful, awful eye exams ever again.  The blood vessels have grown out properly as they should to meet the retina.  Thank you Jesus!  I absolutely hate watching him have to suffer through those eye exams.  Of course, I don’t have to watch but I like to help hold him and talk to him during the process. 

Pulmonologist (lungs) – I love Chance's pulmonologist!  The appointment went very well.  I was so happy leaving his appointment I felt like doing a happy dance.  I needed some good news.  He listened to Chance's lungs and said everything sounded great.  After the swallow study on Tuesday, we can start weaning his oxygen.  He said to start by taking him off completely for 1 hour 2x a day and watch his saturation level.  Then, we can go 2 hours 2x a day.  After a few days of weaning, if he's doing well (saturation >94) than he'll send out a pulsox (reads o2 level) that Chance wears for 12 hours.  It'll then be picked up, he'll read it, and we'll make a plan from there.  

Speech came and did her eval of Chance and his eating.  She says he is in fact aspirating on thin milk.  I feel so guilty even saying but we were playing around with the amount of thickness and the one she evaluated him on was with no rice cereal.  We’ve only been giving thickened since.  I live in a state of anxiety with Chance’s eating. I feel like I’m shooting in the dark. I don’t want to be playing around, testing the thickness here and there,and just not knowing what is going on.  I scheduled a barium swallow study for next Tuesday, April 16.  He will swallow various dyed thickened consistencies to see which one he can swallow safely with (if any) which will help determine if he is aspirating and/or refluxing.  A slp administers it and a radiologist is there to read the x-rays which they shoot as he swallows.  At this point, his lungs are the most important and the last thing we want to do is to be damaging his lungs even more. 

As you know, we still have his ng tube (feeding tube) which we are still using at least a couple times a day.  Not with every feed but feeds he doesn’t complete or feeds he just doesn’t wake up for. 

I am extremely anxious to get this study done.  I feel it’ll put my mind at ease with knowing a clear picture of what his feeding plan will be.  

Please pray he is not aspirating to the extent where they would say nothing by mouth and for sure have to get a g tube.