Preliminary Sleep Study Results

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.

Dentist Appointment and Scheduled Hearing Test

Nolan and Matthew both had dentist appointments the other day, for a routine cleaning and "tooth count." Matt's teeth look great, and he has two more loose teeth. At the age of seven, teeth start popping out like popcorn. Nolan's teeth are hanging in there, but reflux and tooth-grinding has done some damage. He had a sealant placed on a bad tooth last year in the hope of stemming any further damage. Unfortunately, the tooth is breaking down and he'll need to have a filling placed.

We're returning to the dentist on February 4 to have Nolan's' tooth fixed and to have sealants placed on Matt's permanent molars. I didn't take any pictures at the dentist, so I'll post a picture of Nolan having fun on a recent trip to our local ski hill:

Nolan's hearing has been questionable over the past few months. He does hear with his hearing aids, but he has to work to hear. His speech teacher and teacher of the deaf have noticed some regressions lately - particularly with the soft sounds like /s/ and /th/, in addition to the loss of the /ch/ sound (he pronounces "chair" as "share," for example).

I took a video of his recent hearing difficulties to show to our ENT (transcript follows):


 [Transcript]: 
Me: Nolan, who's winning?
(no response)
Me: Nolan, who's winning?
(no response)
Me: (loudly) Nolan, Nolan - Hey, buddy!
(Nolan looks at me)
Me: Who's winning?
(Smiles and has no idea I''m speaking)
Me: (louder): Who's winning?
(Still can't hear me and imitates me covering my mouth)
Me: (loudly) Who's winning?
Nolan: What?
Me: Who's winning?
Nolan: What was running?
Me: Who is winning? Who's winning the game?
Nolan: Ruining the game?
Me: Winning. Who's winning. Are you winning, or is Matthew winning?
Nolan: I'm winning.
Me: You're winning? Good job!

I was about 6-7 feet away while taking this video. There was some background noise with the TV, but the volume was low. He doesn't hear soft speech at all with his hearing aids. Our audiologist refuses to do aided audiograms, and I know this child is not amplified appropriately. It is like pulling teeth to get any aided testing performed at all for him. I would give my left arm to have Jane Madell or Carol Flexor work as his audiologists.

In any case, we are having another independent hearing test performed on February 13 at Buffalo Children's. This time, we're requesting aided testing and open-set speech recognition. The audiologists at Children's cannot adjust Nolan's hearing aids, but at least they can tell us if they're not set appropriately. Nolan's hearing in his right ear is solidly in the severe range, and his left ear is nearly there.

Sleep Study - Times Two

Our family camp-out at the sleep center is over, and I am glad it is behind us. We arrived at 8:30 pm and started the hook-up. Matthew was completely freaked out by the entire idea, so we hooked Nolan up first.

Sleep Studies - not much fun

Almost all hooked up.

Matt finally agreed to get hooked up, once he saw that the "stickers" really didn't hurt.

Watching TV during the hook-up.

We got Nolan settled into bed and let him play the tablet while Matt was getting hooked up.

Look, Mom, I'm a UNICORN!

This is the first time we've gone to one of the sleep center's satellite sites, and I wasn't impressed. They don't do CO2 monitoring and never notified us of that fact. This isn't a big deal for Matt, but Nolan has known severe apnea and should have his carbon dioxide levels monitored (particularly since they've increased over time). We'll see what our ENT says about this, in any case. They also had no pediatric pulse-oximeters, so nothing really fit Nolan's small fingers. I told the respiratory tech to put it on his toe (the respiratory tech has obviously not dealt with many pediatric patients and had never heard of this before). This solution worked, thank goodness.

Wired and Tired.

Nolan was quite uncomfortable in the night, and had his leg pains. These are not really "growing pains," as he occasionally gets them during the day and cannot walk. They also only affect one leg. I have to see if I recorded which leg was affected last time, but his right leg was killing him last night. He would arch out of the bed and become extremely tensed. I asked him if it hurt, and he would scream, "my leg, my leg!" He wanted me to pull on his leg, and when I did he wanted me to pull harder. I was afraid to hurt him, so eventually stopped.

I did catch it on video, as the pain would wake him from his sleep and he would cry out. I am going to show it to our ENT to see what she thinks. The pain isn't frequent, but is very severe and happens during the day as well as the night. I'm not sure if it is more of a cramp or a "pins and needles" sensation.



Fortunately he finally fell asleep, but woke frequently to pull at his C-Pap mask and at his leg. It was a really, really long night - I was relieved when the lights came on at 5:00 am and we could go home. We stopped by Tim Horton's for coffee and doughnuts. Both kids fell asleep the second we got home. The sleep study results should be available in 2 weeks.

Sleep Studies Tonight

Nolan has a C-Pap titration tonight, which is essentially a souped-up sleep study. We want to make sure his pressures are set appropriately and that his apnea is controlled. Sleep studies are never fun, but since his sleep laryngoscopy shows progressively worse laryngomalacia, we need to verify that his C-Pap is handling the airway obstruction.

Since Matt occasionally snores and has a few other symptoms that may indicate sleep apnea, he's having a sleep study done, too. Hopefully he is in the clear, but as long as we're doing the study for Nolan, we might as well have Matt done at the same time.

We'll head to the sleep center this evening - our arrival time is 8:30 pm. Fortunately, Nolan is now five and can go to the sleep center in Dunkirk - this is much closer than the children's hospital in Buffalo. We're grateful for the closer location. Dennis will be coming with me, as we need one parent per child.

We'll all be exhausted after our little family "camping trip," so Saturday will be a quiet, "resting" day for all of us!

Total Brag Post

Nolan is doing really well in Kindergarten. Really, really well - he is in the "100 club," which includes the 8 children in his class that can count to 100. He knows all of his letters and letter sounds, and is starting to read. Over the past month, he has started to take off with his reading skills. Instead of drawing a picture response on his classwork, he is now writing his answers.

If you can't read "kindergarten," his answer says, "My favorite thing about my house is TV."

He is reading, writing, and excelling in his mainstream kindergarten classroom. I wish I could send this paper back in time to that worried mother, sitting in an armchair with her baby and learning he couldn't hear very well.

I guess we can stop worrying about whether he'll be able to read as well as his hearing peers. It appears he'll read better than his age-matched peers.

Awesome.