Thursday, October 14, 2010

A Long Day, Part II

Remember when I posted a video of Nolan snoring, a while back? When we first suspected that he might be waking in the night because of obstructive sleep apnea? The video is here- go watch it; I'll wait.

He's pretty loud, and we don't hear it all the time. The tonsillectomy and adenoidectomy didn't fix it. The reason the T&A didn't work is:

Nolan is NOT snoring.

That is the sound of his airway collapsing, just above his larynx (voice box). He has inspirational stridor, caused by a floppy airway.

He has laryngomalacia. Pronounced La-Ring-O-Malacia.

For my friends who have infants with laryngomalacia, keep in mind that this is generally a very benign condition of infancy, most children outgrow it, and most children have no other associated issues with oxygenation, growth, or other problems (other than noisy breathing). Almost all babies outgrow the laryngomalacia by the time they are two years old, and never look back.

Nolan does not have the "mild" (though loud) infantile laryngomalacia. In fact, he never had noisy breathing as an infant at all (other than the "snoring").

His breathing is obstructed, causing oxygen desaturation at night. He has severe GERD and mild delayed gastric emptying. He's finally on the charts, but he isn't exactly growing at a marvelous rate- we'll be lucky if he finally gets out of a size 2T by the time he's four.

Because his growth and health is affected, his ENT is recommending a procedure called a supraglottoplasty, which will remove the floppy tissue and cure the laryngomalacia. This will probably cure the obstructive sleep apnea, might cure the GERD, and should set him on the path to better growth. It will also stop the long-term health effects of obstructive sleep apnea, which includes rather nasty things like heart failure.

The supraglottoplasty is not an easy procedure. Should we elect to go this route, Nolan will be kept in the Pediatric Intensive Care Unit (PICU) on full ventilatory support for two days. His airway will be swollen after the procedure, so they will have to breathe for him until the swelling goes down. He will probably have trouble swallowing for a week or so.

We don't have very many options. They used to do tracheotomies for children with severe laryngomalacia, but since the advent of the supraglottoplasty, tracheotomies are very rare due to this condition (thank goodness).

The other options are to leave the situation alone and monitor, though his obstructive apnea (and laryngomalacia) have only gotten worse over time. The long term consequences include cor pulmonale and growth failure. C-Pap won't work, because the floppy airway will not be "kept open" by the air pressure (instead, it would just be pushed against the larynx, blocking his airway). The nasal steroids the sleep neurologist recommended would have been absolutely useless- the obstruction is not in his nose.

There is a very good likelihood that we will be undergoing this procedure, though Nolan has to undergo another 24 hour pH probe while on his Nexium, to prove that his GERD is under control. Laryngomalacia can recur in children who have uncontrolled acid reflux, so our first step in this little journey will be to get that reflux under control.If the GERD isn't under control, then we will have to do something to control it before embarking on the supraglottoplasty.

It looks like we're in for another very medical winter. We will see the ENT again on November 15th, where we'll get to watch a video of Nolan's laryngomalacia and make some decisions regarding his treatment.

If everything goes according to plan, he will be free of his laryngomalacia, obstructive sleep apnea, and possibly even his GERD by Spring.


Melanie said...


I am trying to stay focused on the last sentence of this post!!

MB said...

While I'm very happy they finally figured out what's wrong, sorry you all have to go through yet another medical procedure. :(

Joey @ Big Teeth and Clouds said...

Leah, my thoughts and prayers are with you this winter. That last bit is wonderful and I wish you great strength in getting there.

Julia said...

My, my. Well, taking the long view, at least you have solid answers and an excellent chance to get past a lot of these issues once and for all. And a few of the puzzle pieces (GERD and apnea) are starting to fit together. Is the floppy airway basically a congenital dismorphism? Any chance that there's an overall pattern of slight cranial dismorphisms that could account for the eternal ear infections and the hearing loss, too?

tammy said...

So glad Nolan is back home and feeling better. Poor little man has been through so much in his short three years. Thinking of you all and praying the fall procedure will lead to a Spring free of apnea, GERD, and laryngomalacia.

Herding Grasshoppers said...

Oh Leah,

what a LOT to weigh and consider!

I'm sure you'll make the best decision for Nolan. Praying for you all,


Auntie said...

Leah, thanks for keeping me in the loop. I am sad that Nolan has more procedures to go through. I keep thinking that every medical intervention will be his last. I pray that this is the case with the next procedures. Let me know if there is anything you need help with.

xraevision said...

Oh Leah, I suspected Part II would be quite serious. I got the impression that you were digesting news and contemplating options. Wow, hard to believe they used to perform tracheotomies for this condition. The new and improved option sounds quite serious too though with lots of healing time required.

X has tracheomalacia due to his underdeveloped trachea. Reflux and/or heavy breathing (crying) used to cause it to collapse and then he would stop breathing. Ugh. His trachea is now larger and still probably floppy, but doesn't completely collapse anymore, thank goodness.

Thanks for your continued support, and all the best to you in the next few weeks with your appointments and decision making.

Bad Breath Cures said...
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Elizabeth said...

Yikes. You've been through a lot. I'm hoping that the latest diagnosis leads you to the solutions you need!


Wow, that's a lot to take in. My prayers are with your family.

Sue Inge said...

That is so sad for your little boy. My son was also born with this. I hate having to tell every single doctor what its called because it is such a long, crazy word! My son has somewhat outgrown it, he is now 4 1/2. But when he gets sick the stridor comes back full force. He used to get croup a lot and it was terrifying and only compounded by the stridor. I have a lot of sympathy for little Nolan. I will keep him in my thoughts.

Terena said...

wow... I've never heard of that. I wonder if that is what Queen Teen had. Thankfully she is sleeping better and hardly snores any more, but she does occasionally take deep breaths, like she's remembering to breath. Hmmm... I should talk to her pediatrician more.

I know it's scary, but how wonderful they may have found something that can help him.