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.