Wednesday, September 28, 2011

Catching a Break

Today we got back the results of Dean's last sleep study from the 16th. We have an appointment to see the pulmonologist next week, so there is a lot to talk about.

If you remember from the last sleep study, Dr. Yu diagnosed Dean with mild peripheral chemoreceptor deficiency, meaning that his body is not kicking up oxygen levels during times of stress and/or sleep. This supposedly explains the desaturations (drops in oxygen levels, which are getting worse with this last study) and apneas throughout the night. Right?

Well, I don't buy it.

This sleep study showed that the obstructive and central sleep apnea events that Dean is having all occurred in the supine (on his back) position. If he were truly having issues with chemoreceptors, wouldn't that mean the position wouldn't matter?

I've polled a lot of other PWS parents (and other parents of children with similar chronic issues) and it seems that getting tonsils & adenoids out has greatly improved or eliminated similar symptoms. It might also be related to why Dean has started getting sick so much since around the same time that the apnea showed up. Dr. Yu examined Dean's tonsils at our last appointment, but she can't see his adenoids. Consensus seems to be that even without enlarged tonsils/adenoids, it can still be really helpful to have them out.

So we're still going to see her next week, but we're also going to look to an ENT for another opinion. I'm going to talk with Dr. Miller and hopefully get everyone on the same page to make a course of action.

In the meanwhile, I'd of course like to protect my sweet boy's little lungs, brain, and heart from as much apnea as possible, so I was thinking about what to put on his back to dissuade him from sleeping on it. What was that you said? A pool noodle? My thoughts exactly. Somehow, I managed to get this on Dean's back without him flipping out. No clue how, because usually he pitches an everloving fit if I attach anything to his body. I could only document the noodle's presence through blurry action shots as he walked away:

Many people in hearing about this have lamented Dean not being able to "catch a break." I appreciate the sentiment and often think to myself, 'YEAH, where is the break?' It's one of those crazy-making, never-answered types of questions.

But really, with a syndrome, there's not a "break." That's the point. It's a chronic situation that affects Dean every day of his cute little life. I mean, I suppose some people who are extremely mildly affected by PWS or another syndrome get a little more of a break than do others, but that's probably the exception more than the rule.

I remember during AP Environmental Science during high school, I did a presentation with a partner on noise pollution. We learned that most damaging to your hearing is not the booming, significant noise events like going to the occasional rock concert and standing too closely to the speakers. It's the low-level, chronic noise that continues without much break that is most damaging to one's hearing.

Similarly, the chronic nature of PWS sometimes is just so freaking wearing. I just want to collapse and let it all wash over me. But that doesn't help me, and it surely doesn't help our son. It goes back to the name of this blog, the need to dive into the waves that crash in rolling fashion against the shore. We just have to keep going. And I know that at the end of my life, looking back on all this craziness, it is absolutely, completely worth it. For the love of this sweet boy, it is absolutely, completely (yes, I said it again) worth it.


Kevin said...

Would Deano have a go with Breath-Right strips at bedtime? Some of my friends swear by them. I find that they help, but I can sleep on my side the whole night, so I have not been using them. Laura also give me a shove on occasion.

Allison Peretin said...

I've also heard of sewing a pocket on the back of a night shirt, and putting a golf ball in it. PUt a button on it, and they can't get it out. Just an idea. I like the noodle one, too.:)

Ali Foley Shenk said...

GUnK, I don't know about the breathe-right strips since his problem isn't snoring. It's something in his throat that is the problem, at least so we think. They probably couldn't hurt though! I bet he would initially try to pull it off and then just leave it alone.

Allison, great idea! I definitely would not want to lie on a golf ball. :)

horace said...

Hey Ali. While reading your post, I was reminded of how when Olivia was in the NICU (struggling a lot to breathe for four months), she always saturated much better on her stomach and worse on her back. They explained that the lungs are more able to expand while on the stomach (I think?) Based on that, I wasn't surprised to hear he doesn't saturate as well on his back. Despite disliking most of our care providers, we have an awesome pulmonologist and at Children's if you wanted to consult with another person about this (I could give you his contact info to email - he is very generous in giving/sharing his knowledge). He may not be expert in PWS (but maybe he knows something about it?) He is wicked smart and I am pretty hard to impress.

Ali Foley Shenk said...

My mom has apnea as well and was told the same thing about sleeping on her back. What's the name of the pulm at CHB? We met with someone there once, but I don't remember his name. I really liked him.

horace said...

His name is Larry Rhein. I can give you his email if you want (probably in an email to you). He really knows his stuff in terms of what saturations need to be, etc. He is a board-certified pulmonologist, neonatologist and pediatrician (so in three disciplines). Despite being an over-achiever, he is so down to earth and available. I used to call him constantly with my freak outs about Olivia's lungs. Let me know if you want his contact info or you could probably find it on the children's website as well. He also runs this music class for kids with lung issues who can't socialize in public because of concerns about germs. He is known to the community as giving hope to parents with kids who have any number of very difficult medical issues, so I feel like he could potentially be someone who would at least do what he could to find more out about PWS if he doesn't know already?

Ali Foley Shenk said...

Do you think he'd be willing to talk to someone he hasn't met? If so, I would definitely like to pick his brain. You have my email still, right?
Ali :)