Aerodigestive Clinic - Results

I know that I said I was going to do a post explaining the whole triple scope thing......well, life just got too crazy, as usual.  So, here I am a week later, finally writing the post.  But, at least I have some results of it to share, too!!

We spent most of the day last Wednesday at Children's Hospital, visiting the Aerodigestive Clinic.  It was a looonnng day!  We visited with the ENT, Pulmonary, GI, respiratory therapist, feeding therapist and speech therapist all in one day.  Oh, Madi also had a chest X-ray done too.  I was so thankful that Mark was able to come to the appointment with Madi and I.  I don't know how I would have entertained her AND talked to the specialists for 5 hours straight!

The next day we showed up at the hospital bright and early (5:45am check in time) for the procedures.  I was so nervous for my baby girl to go under anesthesia!  The triple scope consisted of a Laryngobronchoscopy, Bronchoscopy, Upper endoscopy with biopsy and pH impedance study.

I don't want to do all these procedures!!!

Laryngobronchoscopy


This was the ENT's portion.  He checked out the anatomy of her nose, throat, larynx, voice box, etc to see if there was an anatomical reason she is aspirating.  Sometimes there can be a cleft in the larynx that causes it and it is completely fixable.  Well....she didn't have that.  There is no anatomical reason why Madi is aspirating.

He did say that her larynx (right above her voice box) is narrow.  It should be more round but instead it is oval.  And even though her tonsils/adenoids are not huge, they are contributing to the sleep apnea that she has.  So, sometime over the summer he suggested we have a T & A.  While they do that, they will "clip" the sides of the larynx to help "open" it up.

Bronchoscopy


This was the Pulmonary portion.  They took a scope through the vocal cords and into the airways of the lungs to look at the structure and get samples of fluid in the lungs.  The big thing we learned......she has Grade 1 stenosis.  What does that mean?  She has narrowing of her airways.  Approx. 25% of her airway is "blocked" due to swelling and inflammation.  Whether this is due to an infection or the result of the aspiration, we are yet to find out.  They sprayed a solution into the lungs and then sucked it back out.  Whatever "grows" from the stuff they sucked out will tell us whether she has an infection or not.  Since we haven't heard to put her on antibiotics, I think the inflammation is due to the aspiration.  Now that we know she is aspirating, hopefully we can get that under control and then swelling will go down.

Another thing we learned during this.....her windpipe is "flat" and soft.  It is supposed to be round and firm.    The combination of the "flat" windpipe and the narrowing of her airways.......it is no wonder she gets so sick when she gets a common cold.  She can't breathe!  There is nothing to do about the windpipe, hopefully as she grows and gets bigger, it will get more firm and round.  And hopefully her lungs will repair after the aspiration is under control.

Endoscopy


GI's portion.......he took another scope into the first part of her intestine, stomach and esophagus.  He took samples of each portion.  The samples will tell us whether she has celiac disease (which people with Ds are prone to have), and whether she has damage due to another food allergy or the reflux.  The stomach and esophagus looked great, in terms of damage from the reflux.  So, it seems that the medication we are using seems to be doing it's job!  One thing he said is that kids with Ds that have reflux tend to grow out of it by the time they are 2 years old.  I hope that holds true for Madi!

At the end of the endoscopy, he placed a pH probe into the esophagus and then out her nose.  She had to have that in place for 24 hours, which is why we had to stay the night at the hospital.  The pH probe is going to tell us how often she is refluxing and to how extreme.


In Conclusion


We don't know what is causing the aspiration.  Most likely, the "low tone".  Hopefully she will grow out of it as she gets older.  There definitely are a couple of positives since we are thickening her fluids:  her reflux is even better than before.  Even though she has been on the Prevacid, she would still spit up from time to time.  And she definitely had the sour milk burps a lot.  Well, that is all gone!!  And she no longer has milk coming out of the sides of her mouth when drinking her bottle.  She used to get a bib very wet after every feeding but now, you don't even need one.  I think she is able to control the thickened fluids in her mouth vs. the thin liquids.

We will retest with another swallow study in a few months to see if anything has changed.  Hopefully she will be more proficient with the straw cup by then and they will test her with that, too.

The big thing we learned is the "why" Madi is so sick all the time and why she can't breathe.  The narrowing of the airways, flattened windpipe and low tone of her airways just make it next to impossible to get over a common cold.  With the aspiration getting under control and as she gets older and stronger, hopefully most of this will go away!

I am on Instagram now.......so, if you want to "follow" me, my name is cathairhouse.