The phone rang last week, and caller ID flashed "Home Healthcare Company" on the display screen. I figured the HHC was calling about insurance problems, or Nolan's next formula delivery. When I answered the phone, it was the other home healthcare company - the one that deals with Nolan's respiratory support.
We needed to increase his C-Pap pressure, so the respiratory therapist walked me through the process. I don't have Nolan's full report yet, but this is an indicator that his apnea is getting worse over time. Lovely.
Since I suspected Matt had sleep apnea, he had a sleep study, too. The pediatrician ordered this study, so I have access to the full report a little earlier than Nolan's. The pediatrician's office called me because he does have mild obstructive apnea, and he also has central sleep apnea. This sent them all a-twitter, but Nolan also has central apnea, so I'm not really phased by it.
For those who don't know what the difference between central and obstructive apnea is:
Obstructive Apnea: The child is trying to breathe, but something is blocking the airflow. This could be tonsils, adenoids, a floppy airway, or low muscle tone.
Central Apnea: The child's brain forgets to tell the child to breathe - no attempt is made to take a breath. This is usually neurological in nature.
In any case, Matt has both types of sleep apnea - just like his brother. He isn't nearly as severe as Nolan is with the obstructive, but they will probably want to take his tonsils and adenoids. The pediatrician is going to send me Matt's sleep study report in the mail, as I have more of a clue of what it means than they do.
Their initial inclination was to send Matt to a neurologist and a cardiologist for a full work-up. This would be fine, but if he is like his brother... there is nothing awry with his brain. I already have ENT appointments set up for both boys on February 18, so I will let the ENT sort it out and determine which tests to order. As our ENT explained, sometimes kids with longstanding obstructive apnea develop central apneas because the respiratory center of the brain "damaged" by the constant lack of oxygen during sleep.
I am really irritated that they didn't do CO2 monitoring at the sleep center we went to - it is likely that both boys will need follow-up studies, so I'll book those at Buffalo Children's to make sure we get a complete polysomnogram (PSG - sleep study) performed.
So, how did I suspect Matt had apnea? The signs he had were:
- Breathing through the mouth at night (and often during the day).
- Gasping in his sleep.
- Occasional snoring.
- Tired and weepy by the afternoon hours/frequent melt-downs.
Nolan has slightly different signs, and they are typical for malacia kids:
- Extending his head back to keep his floppy airway open.
- Loud stridor (sounds similar to snoring to the untrained ear).
- Audible stops in breathing.
- Grayish skin around his mouth (cyanosis) during sleep.
So now we have two kids with sleep apnea. I really, really need to start playing the lottery.
10 comments:
Oh gee, is it wrong that I'm chuckling at the photo you included? (LOTR fan...)
Gracious! Well, maybe (wishful thinking...) taking his tonsils and adenoids will help.
In my prayers,
Julie
I love that photo - a fellow laryngomalacia mom made it and I had to use it.
I do think that the problem is adenoids and/or tonsils for Matt. Hopefully it's a quick fix!
Our sleep specialist stressed that central apnea is common to kids and a normal part of development - that most kids outgrow it. Not saying it's not a concern but rather reinforcing your "not phased by it".
Fingers crossed for all of you!
~Robyn
I agree, Robyn - they aren't our normal sleep center so they didn't list the # of centrals... I'm assuming they're rare central events, which aren't so worrisome. I have a cardiology question to ask, though - I'm going to leave a comment on your blog so you can see it. Not sure if it is something you know about, or if it is a problem - wide QRS complex. Matt is showing "rare premature wide QRS complex" - I'm sure the ENT will refer us to a cardiologist for a work-up, but this is something I know nothing about. Hopefully it's just a variant of normal.
Ha! That meme is totally right.
Agh! So sorry you are dealing with it times 2! Hopefully all Matt needs is to get rid of those T&As!
I hope that takes care of it, too! Surgery x 2 in the spring. The question now: do both kids at once or at two separate times?
Our lives are NEVER boring.
Hi Leah
You asked me about some heart stuff but I'm not super familiar with your specific question... So of course I googled it! Here's my guess based on what we know from Lauren. You know the sinus rhythm - the bumpy line they always show on tv shows when they're monitoring someone in a terrible state of health? That one. The high peak is called the QRS complex. It shows the electrical output/signal of the ventricles. The venticles are the strongest part of the muscle so the signal is the strongest = big peaks. I would interpret the "rare" as "once in a while throughout the duration of tracking this showed up" and "wide" as the peak was wider - took longer to complete the up-down. It means his heart beats were somewhat irregular but not consistently irregular.
That said, apnea has a negative impact on heart development so go to a cardiologist regardless. If they don't suggest it, ask for it. Having a baseline - for Nolan too - gives you something to compare against over time. It can give you a quantitative measurement of the affect of their apnea. Let me know if you need more info about how exactly apnea impacts the heart muscle - you can email me directly too... robyn at thesweetone dot ca
PS: Has anyone told you lately what an amazing mom you are?
I read it as "once in a while," too. I did talk to another mom of a child who has an airway malacia, and her son had the same symptom as a consequence of long-standing apnea. Matt doesn't have a malacia (as far as we know), but it was comforting to hear that. I will ask for a cardiology work-up. Nolan had an echo and EKG at the age of 3, before his murmur showed up. The geneticist at Cleveland Clinic heard it for the first time, and its been heard sporadically since then - mitral valve prolapse, they think. But we're not sure - the echo at 3 didn't show anything and he didn't have a murmur then.
Matt had a murmur at birth and they did an echo for an open PDA... I think??? I can't remember exactly. So we should probably see a cardiologist since he has a history of something-or-other (you can tell I am well educated in cardiac issues - not!).
You just don't get a break, do you? Interesting results. Does the fact that Matt have apnea as well suggest that Nolan's is separate from the hearing loss and intestinal problems, etc. -- instead of all of it falling under some mysteriously hard-to-diagnose syndrome?
It is unlikely that Matt's apnea is caused by the same problem as Nolan's, Julia - Nolan has a floppy airway caused by a condition called laryngomalacia (LM). Nolan has atypical LM because it is progressive in nature and didn't develop until he was a toddler. The chances of fixing Nolan's airway difficulties are not high.
With Matt, the cause is likely to be enlarged adenoids and tonsils, which is actually quite common in kids. The good news is that it should be easy to fix.
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