Wednesday, June 22, 2011

Welcome to C-Pap

Nolan, sans equipment

We took a trip to the sleep neurologist yesterday. The sleep center has an office in Dunkirk, which is (thankfully) only about an hour away from our hometown.

The sleep neurologist told us several things, which are all very comforting. The first is that Nolan's sleep apnea is now at a level that is not dangerous to his heart. If we didn't treat it at all (and it remained at the moderate level), his heart wouldn't be harmed at all. His growth and mental development is another issue, though, so we do have to treat it. Without getting the right amount of sleep (and oxygen) at night, his growth will slow and he will struggle with fatigue and the ability to focus in school. Interestingly, the incidence of sleep apnea is quite high in children diagnosed with ADHD.

The other wonderful bit of news is that there is a possibility that Nolan will grow out of the apnea. It has slowly been getting better since it was first diagnosed: whether that was due to the surgeries or due to growth is unknown. We can't know for sure, but there is the potential that as his airway grows, the laryngomalacia will have less of an impact on his ability to breathe at night.

This is an important bit of information, because we do not want to embark on a permanent procedure (the Nissen Fundoplication) for a problem that may be temporary.

Our biggest concern with the C-Pap was the fact that Nolan has midface hypoplasia (this causes his flat nasal bridge). A C-Pap mask places pressure on the face, and can cause the mid-face to retrude as the child grows: this is an issue with any child on C-Pap, but is a bigger issue in a child who already has a retracted mid-face area. The sleep neurologist wasn't concerned about this at all, because we can use several different masks with different pressure points, and alternate them every few days.

The other concern is the potential for the C-Pap to open his airways and allow the acid reflux to penetrate his lungs. This will effectively determine if C-Pap is a viable intervention for Nolan's apnea. If he starts developing aspiration pneumonia or nodules on his vocal cords, we'll have to stop C-Pap therapy. On the other hand, sometimes C-Pap improves night-time apnea because it removes the obstruction (an obstruction in the airway creates a negative pressure in the chest, which effectively sucks the reflux up the esophagus). Since Nolan's reflux is worse during the day than the night, it is unlikely that the C-Pap will eliminate the reflux. Still, the thought that it might actually help with the night-time reflux is encouraging.

The only way to know if the C-Pap will shoot his reflux into his lungs or help prevent the reflux from occurring is to go through a C-Pap trial. Nolan is scheduled for a C-Pap titration on July 7.

The C-Pap titration is basically a sleep study, but Nolan wears a C-Pap mask. When he goes to sleep, the sleep technician adjusts the pressure of the C-Pap machine until the apneas disappear. If he fails C-Pap (a possibility because of his hypotonia), they'll discontinue the C-Pap and try a BiPap. A BiPap lowers the air pressure to make exhalation easier - it is recommended in kids with hypotonia, but the insurance company won't cover it unless C-Pap is attempted first.

The Home Healthcare Company (HHC) will contact us after the sleep study to set up Nolan's machine. I really hate adding another piece of equipment to the dear boy's regime. It is certainly better than doing an irreversible surgical procedure that may cause terrible side effects, though, so we are all for giving it a try. The best thing is that a C-Pap is entirely reversible: if Nolan actually does outgrow the apnea, then we can simply stop using the C-Pap with no permanent side effects.

The neurologist measured and weighed Nolan before we left. He measured in at 39", which is wonderful. He is back on his height percentile line (he had been slipping down the percentiles, but a sudden growth spurt has brought him back to where he belongs). The bad news is that he weighed in at 31 pounds: he has lost a pound. This places his weight-for-stature somewhere between the 5th-10th percentiles (hey, he's on the charts, so I'm not complaining)! It appears our dear boy cannot grow up and out at the same time.

Hopefully the C-Pap will make growing a little easier for him.


Herding Grasshoppers said...


That's a lot of hopeful news :D


xraevision said...

Does the C-Pap study require YOU to sit by Nolan's bed and stay awake all night while he sleeps?!!

This is completely an aside, but X's tracheomalacia has stopped affecting his breathing also due to physical growth. One, the flimsy trachea tissue will become stronger as he ages, and two, his trachea will grow wider and therefore, be unable to collapse onto itself at some undetermined point. X hasn't had a blue spell for ages, but his breathing still sounds restricted at times, even now. It's really interesting to learn about laryngomalacia and compare.

And, by the way, X is growing up too, but he's still hovering under 30 lbs.

Smilen Champ said...

My name is Jenna and I came across your site. Nolan is an amazing, courageous, strong and determined fighter. He is a brave warrior, an inspirational hero and a smilen champ. I was born wiI love it when people sign my guestbook.

leah said...

Michelle, sleep studies SUCK. At least for the parents - I am up most of the night and then get to drive 2 hours home from Buffalo at 5:30am. I have a feeling the C-Pap titration will result in almost no sleep for me (at least Nolan can sleep in the car on the way home if he doesn't get his full amount during the study).

The laryngomalacia itself won't get better as Nolan grows, but the airway will get bigger so that the floppy tissue can't obstruct it as much - if that makes any sense? I guess the reflux causes the tissue to get inflamed, making the LM worse. And then kids with neuromuscular problems develop LM over time because the muscle tissue is just weak everywhere (this is what keeps me awake many nights - neuromuscular disorders are, in general, Not Good). I'm hoping the geneticist at Cleveland can rule a lot of things out, even if she can't give us a "name" for what is going on.

SOme of these little guys have trouble gaining weight. As long as Nolan isn't LOSING weight (or he stays on the charts), I'm a happy camper!