Thursday, February 28, 2013

In Which We Finally Get All the Medications

Nolan was prescribed Augmentin (a really common antibiotic) and Flonase compounded with Bactroban. Our ENT sent the prescriptions to Rite Aid, the pharmacy we've been using. They've been notoriously horrible at filling Nolan's prescriptions, and I keep forgetting to change pharmacies (he's only on Zantac now, so it hasn't been a pressing issue).

When we arrived home from the hospital, there was a message on our answering machine. Rite Aid called and said they don't have any Augmentin. They also couldn't compound the Flonase with Bactroban. They are extremely useless as a pharmacy. They called every Rite Aid store in town, and exactly none had Augmentin.

They finally found a store that had a short supply, so we traveled all the way down to the store on North Main Street to pick up the short supply. When we got there, we discovered we needed to have a label that had been printed out at the Rite Aid near our house to get the medicine. My husband asked when the antibiotic would be ready, and the pharmacy technician snottily retorted, "When will you have the label ready?"

Awake since 3:00 am, having gone through a long surgery day (that didn't turn into an actual surgery), we were not appreciative of the jerk behind the counter.

We returned to our main pharmacy and picked up the label. We returned to the Rite Aid across town. We got the miniscule amount of Augmentin and headed home. We were instructed to return to the pharmacy across town to get the rest of the medicine the following day.

Of course, when we returned, they didn't have the medication. They had sent it to our "regular" Rite Aid. We drove all the way across town and picked up the rest of Nolan's Augmentin. We also picked up the Flonase with Bactroban from Pharmacy Innovations, a wonderful little compounding pharmacy that was quite helpful and kind. Also, they had the medication we needed, which is always a plus when dealing with pharmacies.

In any case, Nolan is now on his Augmentin, Flonase/Bactroban (which he hates), and his regular Zantac.

He still has no signs of an airway infection. He does have a very rare, occasional cough. That is the only outward sign that has developed - nothing in proportion to the amount of pus in his airways. He also says that his right ear hurts (oh please, oh please, do not turn into an ear infection)!

Before he has another prescription filled, I need to switch pharmacies. I've been told that CVS and Wegman's are both fantastic. I am done with Rite Aid. It has been headache after headache with that store - and it would be nice to have a pharmacy that actually stocks common medications!

Wednesday, February 27, 2013

Revision Supraglottoplasty Attempt: Houston, We Have a Problem

Preparing for Nolan's surgery was complicated, but we were extremely blessed to have friends who offered to take care of Matthew while we were at Buffalo Children's. I booked a dog kennel stay for Casey. We had all of our ducks in a row, and were awake at 3:30 am for the trip to Buffalo.

We checked in at 6:00 am, and headed up to the 9th floor. Nolan was exhausted from the lack of sleep and was also feeling the effects of not having his overnight feed. He sat in a chair next to Dennis and didn't do much of anything until our name was called.

Our name was called and Nolan had his pre-op physical. His temperature, blood pressure and lungs sounded fine. He was weighed and measured, and we were sent to a different waiting room to wait for the same-day surgery nurse who would take his history. Nolan was very excited to find the new waiting room had a wii gaming console.

The same-day surgery nurse called me into another room to take Nolan's history. Since Nolan's more recent surgeries have been done in Rochester, those records weren't in their system. When she opened his file, she noted that none of his records were in his system. Apparently, Buffalo Children's didn't start putting records into a computer file until very, very recently. I went over as much of his history as I could remember, and the nurse had to leave to ask a fellow nurse how to spell "gastroparesis." She then took a look at Nolan and remarked on how healthy he was and how it was hard to believe he had so much medical history since he didn't look like he had growth problems and he looked so "normal."

I started thinking of her as Nurse Helpful. Nurse Helpful was quite convinced that there is nothing wrong with Nolan (he is of normal size and weight now, and has no growth issues due to the tube feeding).

In any case, the Amazing Health and Vitality of Nolan will come into play later in this saga.

We were taken downstairs to the 2nd floor, and our ENT and the anesthesiologist came in to see Nolan. Everyone listened to his lungs and heart and we discussed how he would be a direct admit to the PICU. He would be on a ventilator and intubated until Thursday. His records were taken to the OR and the nurse took him from our arms and walked him down the hall. He screamed and reached out for us the entire way. "MOMMY, MOMMY!!!!"

Having gone through this something like 12 times in the past, it never gets easier. Never.

The surgery should take about an hour, so Dennis and I went to get some coffee and something to eat. We feel a bit like seasoned pros at this, and know that the next meal may be a long time coming. We ate, and about 20 minutes later, we went back to the OR waiting room.

This is when we ran into Nolan's ENT.

"Oh, there you are," she said.

"Wow. That was really fast!" we said.

"It was fast because I can't do the surgery."

Houston, we have a problem.

She took us into a conference room and we learned that Nolan has a massive infection throughout his entire airway. I'm not talking about a minor upper respiratory infection. I'm talking about huge amounts of pus from his sinuses all the way down into his lungs. She showed us pictures and a video of his airway.

Remember Nurse Helpful? At this point I wanted to take those pictures and video and show them to her. How healthy does this look, lady?

He had no symptoms of a raging infection. None. He still doesn't have any symptoms of a severe infection. He has no fever, is playing, and is eating "normally" (normally for Nolan, anyway - certainly not normal for a typical child of his age).

Since they couldn't do the surgery, Nolan would be released and we will try again on April 9. I went to the recovery area to see my little boy, who had to go through the trauma of separation, general anesthesia, and IV placement... for nothing.

I am deeply grateful to his ENT doctor for taking the care to scope his airway before doing the surgery, because cutting into his airway and then intubating him with this sort of infection would cause significant danger to him. She is very cautious with airway surgeries in any case, and with Nolan's level of infection there is no way we could do any sort of surgery.

She cultured the infectious "debris" in his airway and we should have the results in a few days. Surgery has been rescheduled for April 9.

In the meantime, he has been placed on Augmentin for 21 days. His "post-op" appointment on March 18 will become his "pre-op" appointment. He'll be placed on another round of antibiotics at that time. Basically, Nolan will be on non-stop antibiotic therapy until his surgery date.

She also ordered a compound of Flonase with Bactroban - this is a nasal solution and we are supposed to rinse his sinuses with it to kill whatever bacteria is lurking there.

We left the hospital and went home. We played "run around the town to find a pharmacy with Augmentin," which is its own blog post. We picked up Matt and the dog from the dog kennel. The dog kennel owner was fantastic and didn't charge us for Casey's overnight stay (if anyone wants a recommendation for a good dog kennel in the Southern Tier/Jamestown area - give me a shout. Sadie Creek is excellent and the owner was amazing throughout our crazy surgery day). I booked Casey into the kennel for April 8, when we get to try this again.

Nolan is home from school today, and I am having extra cups of coffee. He still doesn't appear sick, despite the raging infection we know is in his airway. I'm interested to see what the culture shows.

Wednesday, February 20, 2013

ENT Appointment, Part 3: Tonsillectomy and Adenoidectomy Scheduled

After the ENT finished with Nolan, she moved onto Matt. By this time, we were all exhausted (and hungry): the office was running 2 hours behind schedule, so it was now 1:20 pm and our original appointment time was 10:45 am. No lunch = grumpy boys.

I gave the ENT Matt's sleep study results, which we had ordered through the pediatrician. As a helpful hint to other families, if you suspect sleep problems and are booking an ENT appointment, make sure to get a sleep study run first. It will save a lot of time and an appointment (and copay). If we hadn't had this run, this appointment would have been a consult, a polysomnogram would have been ordered, and then we would have had to return in a month or two to get the results. Since we already had the sleep study results in hand, we saved a $25 copay and about 2 months worth of time.

Matt's sleep architecture is abysmal (I wrote an article about sleep architecture - you can find it here). He has no stage 4 sleep and only about half of the REM sleep he should have. This explains a lot of his behavior and his complete inability to memorize facts (REM is required for memory formation). He desaturates to the low 80% level, which causes him to wake frequently. He also has a lot of periodic leg movements (so does Nolan).

She reviewed the results and was not very concerned about the central apneas and the heart rhythm issues. She sees both of these problems in children who have long-standing, untreated apnea. Matt is a mouth breather, so the problem is likely due to tonsils and adenoids. Since both of our boys have/had central apnea, there is also a chance that our kids just have central apnea when they're young - it could be a genetic thing. It is more likely that the central apnea is a direct result of long-standing obstructive apnea.

Matt is going to have a tonsillectomy and adenoidectomy on March 21, just a few days before Easter Break. His ENT is going to do a bronchoscopy and sleep laryngoscopy just before the surgery, because she wants to make sure he has no other airway anomalies. It would be unlikely, since he doesn't have the reflux or other health issues that Nolan has, but it is better to verify that he doesn't have any airway malacias.

Matt's surgery will be at an ambulatory surgery center, and he'll be released about an hour after surgery. The "surgery" part will be the easiest portion of his procedure: the recovery will be the hardest. Tonsillectomies are horrendous. We've been through 2 of them (Nolan had his tonsils and adenoids removed when he was 2 years old, and he had his lingual tonsils shaved at the time of his last supraglottoplasty).

I'm worried about getting Matt to take the Tylenol with Codeine (he's awful about taking medication of any kind). I'm worried about keeping him hydrated. I am going to blatantly bribe my child provide positive incentives to get him to drink: I have a "reward" bag started. Matt will have a follow-up appointment on June 3 to see how he is doing post-surgery. He'll probably need another sleep study to verify his apnea is gone (and so will Nolan, so we'll probably do another 2-for-1 sleep study).

Our family will have two surgeries in a back-to-back manner. Nolan's will be harder for the actual surgery - staying inpatient is always trying. His recovery will be easier to manage because we have the g-tube and can give him meds, food, and hydration via that route while he is recovering. Matt's surgery day will be easier because he will be home that same evening, but his recovery will be much more difficult since we need him to cooperate to drink and take his medication.

One thing is sure: I am looking forward to the end of March, when everyone will be recovered and on the road to better health!

ENT Appointment, Part 2: Revision Supraglottoplasty Scheduled

Nolan's g-tube and overnight feeds have done amazing things for him. He is now 41 pounds, 43" tall, and in the 37th percentile for weight. He no longer has growth failure, is stronger, healthier, and sturdier.

His C-Pap, however, offers variable performance for him. We sometimes hear stridor over the mask, which means the machine can't quite keep his oxygen consistently high. We reviewed the video from Nolan's sleep laryngoscopy, which shows the floppy tissue collapsing over his voice box.

Our ENT believes the first supraglottoplasty failed due to uncontrolled acid reflux. Now that Nolan has a fundoplication, the acid should be under control and a second supraglottoplasty has a higher chance of success. To maximize the chances for success, Nolan will be intubated and ventilated (while under sedation) in the Pediatric ICU for 48 hours.

Surgery has been scheduled for February 26th.

Next Tuesday.

There has been a whirlwind of activity since the appointment on Monday. We do not have local family, so we are extremely blessed to have amazing friends who will take care of Matthew while Nolan is in the hospital. I have called and booked a dog kennel for Casey. I have called the anesthesiology group to verify they participate with our insurance company (they do). I have taken care of the up-front deposit required for surgery, and moved a vet appointment and canceled Nolan's sleep neurologist appointment.

I am hopeful that Nolan will be released on Friday morning (March 1), but everything depends on how Nolan does after he is extubated and on room air.

If the surgery is successful, we can ditch the C-Pap. It would be really, really wonderful to ditch the C-Pap.

Nolan will have a follow-up (post-op) appointment on March 18, just 3 days before Matt's surgery.

ENT Appointment, Part 1: Audiogram and Aided Testing

We had a trip to the boys' ENT on Monday, and discussed several issues. I am going to break the appointment up into three posts (by topic) to help keep things short and sweet.

First, I managed to get a copy of Nolan's actual audiogram.

The audiogram has Nolan's bone conduction scores (the brackets), his unaided responses to sound (the x's and o's), and his aided responses (the B's). He has had some fluctuation in his unaided test results, which is typical for Nolan.

The biggest concern is Nolan's aided levels, which are only achieving a mild-moderate level of hearing loss. We have friends with similar levels of loss who are obtaining 20-25 dB aided levels, so this is clearly unacceptable. Nolan is only able to detect the presence of a voice when it louder than 30 dB (with aids on).

In any case, our ENT was not happy with the lack of aided testing and real-ear verification. She also thinks he probably needs power aids, since he has a mixed loss and the conductive component requires more power than a purely sensorineural hearing loss.We have some leads on different audiology centers that may offer better aided testing. I have to make a few phone calls, but it will have to wait until after the boys' surgeries (see parts 2 and 3).

Thursday, February 14, 2013

Hearing Test and Audiogram

Yesterday, Nolan had a hearing test at Buffalo Children's. His hearing has been hit-or-miss, and his speech has shown some regression. Nothing serious, mind you, but I still don't like the disappearance of our friends /s/, /j/, /ch/, and /z/,

I don't have his official audiogram in the mail right now, but his unaided test scores are fairly consistent with the October results. His left ear has dropped by about 20 dB at 2,000 Hz, in typical Nolan fashion.

For those who are unfamiliar with audiograms, Nolan cannot hear the sounds above the lines without his hearing aids. Basically, he can't hear any speech sounds at normal conversational volumes. If you shout at him or talk directly into his ear, he can hear enough to make out what you are saying. This is a moderately severe to severe hearing loss.

The reason for his "slushy" speech is more likely due to his aided hearing levels. Obtaining a pure-tone aided audiogram is a tricky business, because digital hearing aids suppress pure-tones as "background noise," which can make the audiogram a bit tricky to interpret. A child may show hearing thresholds of 30 dB across the board, for instance, but really be able to pick up voices at 20 dB.

With that said, Nolan's aided audiogram is terrible. The suppression effect should affect all frequencies equally, and Nolan's results are showing a significant drop-off in the high frequencies. His higher frequencies are not set appropriately for his hearing loss. His aided results are:

Hearing with both ears, Nolan can't really detect f, th, or s with his hearing aids. Z and V are also above the 35 dB line, which explains why he's having difficulty with those sounds. The audiologist noted he couldn't detect her voice until it was at 30 dB with his hearing aids on - essentially, Nolan has a mild-moderate hearing loss even with his hearing aids on.

I did ask about his bone conduction results and whether the BAHA could be an option for him (to eliminate some fluctuation and to give him better hearing). The audiologist stated that the sensorineural component of his hearing loss is too severe for a BAHA, so he is not a candidate for that technology.

His hearing loss isn't severe enough for a cochlear implant, so he doesn't qualify for that technology, either.

Since Buffalo Children's does not have a hearing aid program, they can't adjust Nolan's hearing aids. Since Nolan's current audiologist does not believe in aided testing, she won't adjust Nolan's hearing aids.

Buffalo Children's was very surprised that our current audiologist does not do real-ear measurements, as this may be part of the problem. The DSL program that sets hearing aid amplification levels is based on a set of averages, but is not specific to an individual child's ear canal size and hearing loss type. With a mixed loss, Nolan likely needs more amplification than a child with a purely sensorineural loss.

And then there is the problem of  recruitment and a narrow dynamic range. Recruitment is a problem for people with severe losses. All of the outer hair cells are damaged, so only the inner hair cells remain to transmit sound in the cochlea. There is no gradual increase in the perception of volume - a sound goes from being inaudible to being WAY TOO LOUD very quickly. This makes setting hearing aids particularly difficult, as the level of amplification needed to make a sound audible is very close to the level which causes pain.

So the hearing aid program must be compressed to fit into this narrow range of hearing - the range between audibility and pain. We may not be able to increase his amplification by much, because it would cause him discomfort with sounds that are too loud.

Rock, meet hard place.

Other than the slushy speech sounds, however, Nolan is doing well - so we'll just repeat ourselves more often, use the FM more consistently, and monitor his hearing to see if (when) he qualifies for different hearing technology.

Wednesday, February 6, 2013

Report Card Time

Despite our concerns about Nolan's hearing levels, the boy is doing wonderfully in school. He is pulled out every day by his TOD (teacher of the deaf, also known as a D/HH teacher, depending on where you live). He also gets pulled out twice in a six day cycle for speech therapy. His TOD works a lot on his language and reading skills, so he gets an extra boost in this area.

The school district performs standardized testing (aren't our schools all about the standardized testing these days?) to determine which children might need help with certain skills. Nolan did wonderfully on the Aimes-Web assessment:

If you aren't familiar with the format of the test results, an explanation follows:

The dark line under the gray rectangle is the "benchmark." They expect all students to perform at or above this line. Children who perform under the benchmark (target) line are referred for extra help with reading.

The gray rectangles depict the average range for children in Kindergarten. "KF" denotes "Kindergarten - Fall" and "KW" denotes "Kindergarten - Winter." This shows the individual growth of a child from one quarter to the next.

The dot is Nolan. He's sitting on top of the long pole on a few of the measures. This means that he is outranking his normal hearing peers by a considerable distance. Yes, this is bragging. Shameless, shameless bragging.

  • They test letter naming fluency (LNF) - how many letters the child can name in a minute. Nolan scored 100%.

  • He did very well for letter sound fluency (LSF), too. He's in the average range for this skill. He had to provide the sound each letter makes within a certain time period. 

  • He's also in the average range for the PSF (phoneme segmentation fluency). In this test, the child is given a word (orally), and the child has to break down the word into individual phonemes. If given the word "named," for example, the child would break it down into "n - a - m - d." 

  • The last test is nonsense word fluency (NWF) and Nolan rocks at this skill. They give the child fake words, like "wib" and "kuf" to see if they can read the word using the rules of phonics. Nolan is awesome at sounding out words.

Nolan is starting to read anything and everything - I find him reading quietly upstairs after school. I love it.

The only areas of "developing" status have to do with his fine motor skills, which have always been on the radar. He doesn't really qualify for OT yet, but we're monitoring it and working with him at home. Hopefully his hand strength and coordination will improve with age (he's an August birthday, so a "younger" five year old in the Kindergarten class).

Writing sample, 5 years, 5 months. Not too shabby!

As far as his "special services," we have noticed some regression with certain speech sounds and sound discrimination. He may have lost more hearing, and if his FM isn't on, he can't hear (he is FM dependent, particularly at school).

His TOD has the following notes:

  • Nolan's ability to produce /ch/ and /j/ has decreased, and we have discussed that being, in part, a possible function of a decrease in hearing. 
  • I have him walk ahead of me and give him random words and phrases to repeat and he can do this with his FM on in a very quiet setting. 
  • He cannot perform this task if his FM is not on. 
  • Nolan is struggling with determining whether two words rhyme (he used to have no difficulty with rhyming words).
  • Overall language skills are good considering level of hearing loss.
  • Grammar errors such as "I have saw it before," "He didn't want to get caughten," and "He runned away."
  • Overgeneralizes plurals - adds /s/ to everything: snowmens, foots, ghostus, etc.
  • Vocabulary holes for many basic words, including needle, broom, pot, and vase (examples).
  • Difficulty with directional activities including "behind" and "beside."
  • Difficulty with 2-step direction coloring task (would reach for each color as soon as she said the word so he wouldn't have to store the information in his auditory memory).
His speech language pathologist has the following notes:

  • Nolan sometimes has a slushy, lateral "z" or a whistling "s" when in therapy. These sounds are usually slushy when used spontaneously. 
  • Discrimination of correct vs. error sounds varies from session to session and is tied to his hearing.
  • Some word specific errors such as, "renember," "meed" (for need).
  • Inconsistent /ch/ and /l/ sound.
Overall, Nolan is doing really well. Some of his errors are probably typical for any 5 year old child (using "runned" instead of "ran," for instance). Some are obviously tied to his hearing, particularly sounds that he used to have and has now lost (he had a crystal clear /s/ sound at the age of 2, and it is now very slushy, for example). 

I am anxious to get his hearing test done on the 13th, as that may provide some insight into some of his recent difficulties. He is academically on target and his reading skills are fantastic for a child of his age, so I can't complain!

Monday, February 4, 2013

Matt's Full Sleep Study Results

I picked up a copy of Matt's sleep study results from our pediatrician. We see the ENT on February 18 for both boys, and I have a feeling it will be an "involved" appointment, since we have to discuss Nolan's hearing, Nolan's apnea and laryngomalacia (and probably revision supraglottoplasty surgery), and Matt's results.

As a side note, some have asked about Matt and Nolan both having apnea - and whether that might mean that Nolan's apnea issues are not related to the other issues he has. In short, our kids both have apnea, but probably from radically different causes. Nolan has a condition called laryngomalacia, and he has an atypical version of the disorder. It didn't show until he was 2 years old (not diagnosed until 3 years old) and he has the form that is associated with neurological problems. A supraglottoplasty and epiglottopexy (lasering out the prolapsed tissue and tacking up his epiglottis to the base of his tongue) have been unsuccessful and his condition appears to be progressive. In Matt's case, he probably just has big tonsils and adenoids. The effect is the same, but the cause is radically different.

In any case, Matt's study shows the following (with abnormal results in bold):

EEG/EOG: Latency to sleep onset was within normal limits at 21.9 minutes. Latency to REM sleep was slightly prolonged at 188.5 minutes. Overall sleep efficiency was normal at 92.8%. The patient was observed in both the supine and non-supine position during the recording. Frequent arousals were present and were commonly associated with respiratory events. Spontaneous arousals and arousals associated with limb movements were also observed. All stages of sleep were identified.

What this means (in English): Matt was asleep for a normal percentage of the time, but it took longer than normal for him to fall into REM sleep. He woke up a lot, and he often woke up because he couldn't breathe.

Respiratory Parameters: The baseline respiration rate was 16-20 breaths per minute in NREM sleep. No snoring was noted by the technician. The overall respiratory disturbance index was 5.03 with a minimum oxyhemoglobin saturation of 83%. Mean oxyhemoglobin saturation was 96%. The respiratory events were most prominent in REM sleep. Clear hypopneas were noted. Rare central apneas were also observed.

What this means (in English): Matt has mild obstructive sleep apnea - something is blocking the airflow. His oxygen level dropped frequently, and the lowest it ever got was 83% (normal is above 95%). He had occasional central apneas, where his brain forgets to tell him to breathe. While some central apneas are normal for kids, the central apneas Matt is having are outside that range and are associated with desaturations.

EKG: The baseline heart rate was 82 beats per minute in REM sleep and 78 beats per minute in NREM sleep. Rare premature wide QRS-complex beats vs. artefact were observed.

What this means (in English): This will have to be discussed with the ENT. I am not sure what this might mean (or not mean). There is a good chance we'll have a consult with a cardiologist about this. 

EMG: There were 5.5 periodic limb movements per hour of sleep noted. They were occasionally assoicated with arousals.

What this means (in English): Matt's legs moved frequently while he was asleep. This sometimes woke him up. They don't know why he is doing this. He had 33 periodic limb movements during the sleep study. 


These findings indicate the presence of mild obstructive sleep apnea (for the pediatric age range normal RDI <1.5) consisting mainly of hypopneas, with associated disruption in sleep architecture and oxyhemoglobin desaturation, especially in REM sleep (RDI: 5.03 and minimum oxyhemoglobin desaturation: 83%). If clinically indicated, evaluation by ENT for possible tonsillectomy and adenoidectomy should be considered. Clincal correlation is suggested. Central apneas were also observed. Although central sleep apnea can occur in the setting of obstructive sleep apnea, a cardiogenic or neurogenic cause could be considered and warrant further investigation. Please also note the presence of periodic limb movements. They are of unclear clinical significance in the setting, but may warrant further attention if the patient remains symptomatic despite adequate control of sleep-related breathing disturbance. If follow-up with a Sleep Center physician is required, please contact the center at xxx-xxxx.

What this means (in English): Matt has mild obstructive sleep apnea, which is causing his oxygen levels to drop and has wreaked havoc on the normal progression of sleep stages. He should see an ENT to determine if he needs his tonsils and adenoids removed. The central apnea needs to be evaluated and Matt should see a neurologist and cardiologist to rule out heart problems or a problem with the respiratory center of his brain. His legs are moving a lot, and we don't know why, but we can ignore it for now and see if it goes away once his breathing troubles are treated. If his leg movements remain once his breathing is better, they may need to further evaluation.

Sleep Architecture: In a normal child of Matt's age, about 7% of sleep time should be spent in stage 1 sleep, 46% of time should be spent in stage 2 sleep, ~5.5% in stage 3 sleep, and ~18.5% of the time in stage 4 sleep. 22% of the total sleep time should be spent in REM sleep (data from this article: "Polysomnographic Characteristics in Normal Preschool and Early School-Aged Children").

Matt spent the following % of time in each sleep stage, with the normal % in parathesis:

Stage 1: 1.2% (normal 7%)
Stage 2: 57.0% (normal 46%)
Stage 3: 32.6% (normal 5.5%)
Stage 4: 0% (normal 18.5%)
REM: 9.2% (normal 22%)

Essentially, the kid is sleep deprived. He isn't getting any slow-wave, deep sleep and most of his time is spent in light sleep. He is only getting about half of the necessary REM sleep a child his age should get. 

He had 88 arousals in 6 hours of sleep, many due to a lack of oxygen and others due to periodic leg movements. 

I'm anxious to talk to our ENT to find out what the plan is. The sleep neurologist wants to either have his tonsils and adenoids removed (with follow-up sleep study to prove his respiration is better at night) or to start C-Pap therapy. I have a feeling we'll be removing Matt's tonsils and adenoids, and hopefully that will improve his nighttime breathing.