AUTHOR: Carolyn Savage | POSTED: 11/25/14 6:49 PM
Nicholas underwent a broncoscopy and laryngoscopy this morning. This was his second time being “bronc-ed” by a pulmonary team but the first time an ENT team joined in for a good look at his upper airway.
Here’s what they found…
The pulmonary team found nothing abnormal. His bronchus, lungs and all other parts of his pulmonary system are anatomically normal. They were able to biopsy some cilia (your lungs are lined with cilia…little hair-like fibers that help move mucus and foreign matter out of your airway). The results will be available in a couple of days, but they were able to confirm that they were moving…which is good. (One of the possible diagnosis was a disorder of the cilia and although most ciliary disorders are manageable, they are debilitating.)
So…in a nutshell…the pulmonary team found nothing remarkable. (Same finding as the pulmonary team in Toledo.)
The ENT (ear, nose and throat) team did find something abnormal. Nicholas’ airway right underneath his vocal cords was narrowed by more than 50%. What that means is every time Nicholas tries to inhale, he has to exert 16 times more force than normal. That’s a lot of work for a seven pound baby. It also explains why Nicholas uses his whole upper body to inhale resulting in a lot of shoulder movement and a head bob. Even better…it could mean that he hasn’t been able to take a deep enough breath to fully inflate his lungs. Hence, random wandering lung collapse.
In order to correct the narrowing the physician inserted a breathing tube to manually remove the scar tissue that has formed around the opening of his airway. He called it dilating the airway. He showed us before and after pictures. The after picture definitely showed a widened airway. This is good because if Nicholas was born with the narrowing, it could explain all of this.
Now, before anyone gets too excited, there is a catch to this theory.
Nicholas was intubated last week for 36 hours. During that intubation period he was very, very agitated and couldn’t stop thrashing about. It’s possible the tube running down the back of his throat irritated the airway and caused swelling…which caused the narrowing of the airway that was found today. If that is the case the reason behind the random wandering lung lobe collapses is still unknown.
We won’t be able to confirm anything until Nicholas is extubated and begins to recover.
A Few More Details…
- Much to our dismay Nicholas returned from the operating room intubated. He will remain intubated and on a vent for at least 24 hours (and three doses of steroids to help prevent swelling of the airway.)
- He is comfortable, however. Last week he was only mildly sedated during his 36 hour intubation. Mott does it differently. He is currently more adequately sedated to keep him calm. He looks like a very peaceful sleeping baby burrito.
- We will be repeating the laryngoscopy next Monday to remeasure the airway that was dilated today. We have been told that it may be necessary to re-dilate the airway multiple times before it actually stays open.
Tomorrow Will Be Scary…
Last Friday, when Nicholas was extubated and had trouble breathing afterwards, was probably one of the most stressful days of this journey. Seeing as how we are facing a second “extubation day” there is a lot of anxiety on our part. Things *are* different this time. We already have the steroids on board to prevent swelling and stridorous breathing, but there will be a period of the day where the sedation will be lifted in order to extubate him properly (he needs to be awake enough to breathe on his own when extubated). That will be a rough couple of hours because he will be very uncomfortable. That’s hard for us to watch.
What You Can Do for Nicholas…
As you know Sean and I have begged everyone and anyone to keep Nicholas in your thoughts and prayers. We believe in positive energy and divine intervention and are convinced it is working (in conjunction with some pretty kick-ass science) to cure our little boy. Tomorrow we need to storm the heavens with more prayers for a smooth extubation without complication.
So, if you wouldn’t mind….we’d be most appreciative.
Oh…and About Your Unwavering Support…
I want to thank you. You know, for years I’ve watched pleas for prayers and positive thoughts come across my various social media feeds. I don’t think I’ve ever scrolled by one without commenting and throwing up a small prayer for the person in need, but I’ve always wondered if it made a difference. Now that I’m standing on the side of the begger, I can honestly tell you that reading your comments really does provide a tremendous amount of comfort. I would equate it to a reassuring hand squeeze…over and over and over again…and it helps. It lessens the feeling of being alone in this.
For that, I am thankful.