Anyway, after all of the questions it was finally time for the study. Noah had one done back when he was around 5 weeks old while he was still in the NICU. I was not present when the study happened so this was all new to me. Basically they strapped him in a car-seat type of chair and wedged him in between the machine that takes the pictures and the wall, then they turned off the lights. I had to step behind the lead wall since I am pregnant so I wasn't able to get the best pictures. Brittney was able to feed him and they started off with a thick, pudding-like mixture of baby food and barium dye. Noah pretty much hated the whole experience but he did manage to swallow most of the thick stuff and only a tiny amount went into his airway. Then they tried a thin liquid, apple juice mixed with barium dye. The thin liquid was kind of hard for him to control in his mouth and it ran off the back of his tongue and down his throat. The good part is, is that he was still able to protect his airway and did eventually swallow it. Then they tried what they call "nectar thick" consistency. This is the one that Noah handled the best. It is thinner than the baby food so his muscles didn't have to work as hard to squeeze it down to swallow. But it is thicker than liquid so he has more time to control it in his mouth without it falling off the back of his tongue. Noah does tend to hold and pool the food right at the piriform sinus, where the esophagus and the trachea meet. Unfortunately this means that Noah is always at risk for aspirating whatever food or drink he consumes, which is also true for just his own saliva. But we have to weigh the pros and cons.
Cons are, obviously, risk of aspiration. Which could turn into pneumonia. The lungs are supposed to be sterile so when you have things like food or even saliva that get in there on accident, it creates bacteria and lots of yucky things that are not good. The pros, however, seem to outweigh his risk. The good thing about letting him have tastes of food is that it will become a pleasurable experience for him. Not so much right now because it's new, but I'm hoping that the more we try with him the more he will want to eat and swallow. Also, the more he does swallow, the stronger and more coordinated the muscles will get. Over time, the process of swallowing will become more streamlined and he won't have to work so hard once his muscles and brain learn how to do it.
Right now we are allowed to start with small tastes of nectar-thick foods a few times a day. He is already on aspiration precautions but we have to be extra careful when doing the tastes. I will confess that while I was watching the screen, seeing Noah actually swallowing real food that my eyes got a little bit teary. This is such a big accomplishment for many children with a tracheostomy. Some may go their entire lives never having tasted a thing. But for Noah it is EXTRA BIG! He has so many set backs with his neurological disorder but I know he is making great strides. I know what he is capable of and I am glad that I made this trip so that someone else can see it, too.
Then this morning we had an appointment with the Aero-Digestive Team. This is pretty much like the Trach Clinic that we go to at Dell Children's. We saw a GI doc, Pulmonary, and ENT. I got to tell Noah's history to each of them, which I absolutely love doing. Seriously. I love talking about Noah to his doctors. Especially when they know nothing about PMD. I turn into the expert and I love being right. Okay, enough about that. They all knew that my goal for Noah is decannulation. So they were all examining him with that goal in mind to see if he would be a candidate.
So basically the GI and Pulmonary didn't have a lot to say. They pretty much deferred to the ENT who is apparently a vocal cord expert. She did a scope in the office while he was awake to look at his cords. They put the camera through his nose and down the back of his throat to take a look at his cords. We did see that his adenoids are very large which would make his airway smaller. And then we were finally able to see the cords past all of his secretions. He was screaming and crying so we got a pretty good view of....
MOVING VOCAL CORDS!!!
Yes, that's right. Vocal cords are moving. And moving means not paralyzed like every single doctor in Austin has told us since he was first trached. SO the good news is that he does not need any kind of vocal cord surgery.
The ENT wants him to be able to tolerate his PMV during all waking hours and then we will progress to capping his trach. Capping means completely blocking his trach so that his only airway is his nose and mouth. Once he tolerates capping, he will have a capped sleep study. If those results are good then out comes the trach! Seems pretty easy but at this point Noah only tolerates his PMV for about 30 minutes at a time. It will be a kind of long process but it was great to hear from the whole team of doctors that Noah seems to be a good candidate for eventually getting his trach taken out.
So the plan for now is a triple-whammy appointment at the end of November. Noah will be back in the operating room at Texas Children's having his adenoids removed since they are huge! While he is in there he will also be having Botox injections to his salivary glands to see if that helps with his oral secretions. And she is going to do a scope, just like the one he had done last week so she can see everything for herself. Might as well if he's already good and sleeping.
Lots of exciting things coming up for us so please keep praying that we are moving in the right direction. Pray for Noah that we will continue to witness a true miracle here on Earth. And please pray for me, as well. I am in a constant internal struggle as to what is the right thing to do for Noah and our family. I pray that I am doing what is good and right but only time will tell.
Thank you for loving our sweet Noah and the rest of our growing family.
Before the swallow study when Noah was blissfully unaware of what was coming.
X-ray image of Noah during the study.
My view of Noah's swallow study.
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