Sleep Apnea Diagnosed

Sleep Apnea Confirmed.

Sleep apnea is a condition where you stop breathing while sleeping. There are two main types of sleep apnea, Obstructive and Central. In obstructive sleep apnea you cannot breathe because your airway is blocked. In central sleep apnea you do not try to breathe because something is wrong with your brain that controls breathing during sleep. A person is considered to have sleep apnea when they stop breathing for 6 or more times per hour.

Kyle's lab test showed he stopped breathing 101 times per hour

The following is an excerpt taken from a post found on the Web:

"My son passed away at the age of 8 on March 29, 2008. His cause of death is listed as "complications due to Chiari Malformation Type 1". Due to sleep apnea that was caused by the Chiari, my son simply, slowly stopped breathing and passed in his sleep."

This scares me.

There are many, many web site discussions over the link between Chiari and Sleep Apnea. Of course, I didn't know much about sleep apnea until my son starting showing signs of this disorder. So it quickly became my mission to research sleep apnea for Kyle. Not sure why Kyle's sleep apnea rear its ugly head months after Kyle's decompression surgery but I'm determined to find out.

If you suspect sleep apnea - get tested immediately because the process to getting a machine for sleep apnea takes time.

For Kyle, he met his primary care giver on Oct. 10th. Then he referred Kyle for a home sleep study. We had to wait a week for an appointment with the sleep clinic to pickup a home diagnostic device. Kyle did the home sleep study on Oct. 16th. We returned the device the next morning. Kyle's Head and Neck Surgeon called us with the results Oct. 18th and told us Kyle has severe sleep apnea. The Sleep Lab Clinic called us the next day to schedule on overnight sleep study at their lab for Oct. 31st. We didn't want to wait so we were referred to an outside clinic for Oct. 20th. Oct. 20th he stayed the night at a sleep lab and did the titration study. Oct. 24th our Sleep Lab Clinic calls and tells us Kyle's sleep apnea is central and obstructive so they want to do another titration study on Oct. 31st for a  Bilevel CPAP Auto Servo-Ventilation. So while we are waiting for that appointment, we requested a loaner CPAP machine. The doctor doesn't think the CPAP will do much good because she believes Kyle will need the ASV, but we received a temp CPAP machine today with the pressure setting of 7 based on his results from Oct. 20th.

Sleep Apnea?

Kyle still has something seriously wrong with him.

However, he amazes me. He is doing well (supporting his head) with his halo off. He has 2 neck collars and 1 neck collar/brace (that insurance does not cover, grrr) but Kyle doesn't like them. Keep in mind, Kyle has Klippel Feil Syndrome too so his neck is short, and apparently you need a neck for such devices because none of them truly fit Kyle.

Anyway, Kyle is just happy to be able to put his head on a pillow. However, Kyle still vomits every day. His voice is still muffled and hoarse. He still pauses in his breathing for long periods of time, consistently, while 'trying' to sleep. I've mentioned this to his neurosurgeons several times throughout the months but nothing came of my concern. So I got fed up and emailed his regular doctor at 1 o'clock in the morning on October 10th. At 8am his pediatrician told me to come see him that afternoon. At that appointment, Kyle's doctor scheduled Kyle for a sleep study to check for sleep apnea; also referred Kyle to a Head and Neck Surgeon to check out his throat.

October 12th, I took Kyle to see the Head and Neck Surgeon who used a scope down Kyle's nose & throat to see his voice box. He said Kyle's voice box cartilage is severely swollen and weak. So swollen that it is obstructive and flaps when Kyle breathes in and out. He believes stomach acid (reflux) has inflamed this area. He's not sure why the cartilage is as weak as it is but he suggested to start with medicines to reduce Kyle's stomach acid (which helps with his vomiting issue). If his voice box does not heal then Kyle will need surgery BUT the doctor said it would be an extremely dangerous and difficult surgery because of Kyle's restricted airway.

The Head and Neck Surgeon then told us he will review the sleep study, which is scheduled for October 16th, and let us know if Kyle will need a CPAP or not.

Should know more by the end of this week.

The Halo is Off

Kyle got his halo removed yesterday. He did great!!

His procedure was scheduled for 9am in the OR. Generally, a halo can be removed in an doctor's office but Kyle's neurosurgeon team wanted to removed it in the OR. I'm guessing the issues that occurred in May caused quite the stir so they wanted to be 'a little extra cautious with Kyle'.

The day before this procedure we received a phone call from the Pediatric Anesthesiologist who was with Kyle in May when that procedure went terribly wrong. He spoke with my husband and wanted to make sure we were okay with him being on the team for this procedure. My husband told him yes because he knows Kyle's history. A few hours after the phone call I received an email from the Pediatric Anesthesiologist explaining he will make sure Kyle is safe and comfortable for the halo removal. All of the fuss over Kyle's halo removal procedure does seem a bit out of the ordinary but we are happy that the neurosurgeon team is being cautious.

Kyle only took valium for the procedure. The doctors were planning on numbing each pin site with local anesthetic but Kyle refused. Kyle's dad and I was not allowed in the OR so Kyle took his video camera with him and asked one the nurses in the OR to video some of the procedure, and they did!

About an hour later we were called to meet Kyle in the recovery ward. I was excited to see him so I rushed to the ward and I forgot Kyle's bag of clothes and shoes in the lobby. ;)

He looked good! He had a collar on, hooked up to an IV and monitor leads. His long hair covered his right eye. He looked at me and said, "I feel good". He was rubbing his chest that we haven't seen in 11 months. He looks a bit soft which means he needs to tone up now that he is free from his halo.

The 10 pound halo and vest was now in pieces laying in a bag at the foot of his hospital bed.

The pin sites healed quickly. The doctor put a little circle band aid on the front two pin sites  but a few hours later the sites were nearly closed. The back two sites are hidden by Kyle's hair but they look fine too.

The neck collar they put on Kyle didn't fit. Kyle's neck is short thanks to Klippel Feil. So his doctor told us to go to the orthotist office after he got released from the hospital to have a collar and brace made to fit him.

The orthotics visit took forever! Kyle was hungry and tired but we couldn't leave until he got a collar and brace that fit him. The orthotist worked a long time on customizing a brace to fit Kyle but gave up and started working on a different type brace. It was frustrating but they finally came up with something that worked. However, when we left the orthotist office we walked to a nearby restaurant and Kyle was beyond frustrated with eating with his new brace because the brace pushes under his jaw preventing him from opening his mouth to eat. On the ride home he ripped the brace off.

Halo is Coming Off!

It's time!! The Halo is coming off!!

Kyle has been in the halo for nearly 11 months. November 8, 2011 - October 4, 2012. Decompression on Nov. 8, 2011. Fusion implants on Nov. 16, 2011.

Took Kyle to see his neurosurgeons on Sept. 24th. Explained to them he is still having difficulties in swallowing and his voice is muffled. Told them he is depressed. They agree the halo might be messing with his psyche and his sleep. They assessed him and agree the halo should come off. But they want to see another CT scan first. They ordered him to get a CT scan of the spine on the 25th to check out the fusion.

Two days later, I received an email from them mentioning the scan looks great. The halo can come off. Yahoo!! But they want to do it in the OR .... poo. Last time he was in the OR was a nightmare for a 'simple procedure'.

Took Kyle for pre-op yesterday. He is scheduled to get the halo removed on Thursday, Oct. 4th in the OR at 9am. The plan is to numb the pin sites and give him an oral sedation-type med. Kyle asked if his dad or I can be in the OR with him. No definite answer, so we will see. I'm hoping so and I hope they will allow us to video it.

My 11 yr. daughter says we need to celebrate "4th of Kyle" (because the procedure is happening on the 4th.) Time for a Halo Off party!!
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