Hmmm, The Magic of Steroids

Kyle took his prescription of steroids from Dec. 11th to Jan. 4th for treating his swollen spinal cord.

Major changes occurred during this past month.

First of all, Kyle slept all night on Dec. 17th WITHOUT his BiPap autoSV machine. I was nervous to let him but he fell asleep fast and I checked on him several times throughout the night and he did fine. However, I still tell him every night to use his machine but it's been a hit and miss since 12/17. But it's weird, right? To think he was pausing in his sleep over 100 times an hour and it was because his spinal cord was swollen. All the sleep tests Kyle had to go through and waiting for a sleep machine could have been avoided...possibly. Grrr.

Secondly, he's been full of energy. I know steroids does that but he's been off the steroids for about 20 days now and he is still full of energy.

His voice came back! My favorite change!! His voice is slightly scratchy but definitely louder.

He has NOT vomited since Dec. 11th. Kyle's favorite change. ;)

He CAN sneeze. When he sneezed normal for the first time last month it surprised me because it's been a long time since he sneezed normal.

Swallowing food is easier and he does not have to drink water with every bite of food to push it down.

No headaches. A good thing!!

I'm truly thankful that Kyle has done well this past month, and I just want it to continue!!

His next MRI is this weekend and we meet the neurosurgeons on Monday, 1/28, to find out more about the next procedure. I'm hoping the next procedure can wait a while so Kyle can be Kyle!

More on Kyle's Sleep Apnea

Kyle was scheduled for another titration sleep study on Halloween but we re-scheduled the overnight sleep study for Nov. 2nd. That way he was able to see his baby sister trick-or-treating!

So on November 2nd, Kyle was tested on a BiPap AutoSV Advanced with heated humidifier by Respironics. The doctor called us on November 6th with the results. He said that the standard CPap and BiPap machines didn't work well for Kyle and that this machine was his best option. However, even with this machine his results are still abnormal. Here's the breakdown we received verbally from the doctor from the sleep lab:

Home Diagnostic Sleep Study on Oct. 16th with no breathing equipment:
101 apneas/hour
Average oxygen level low 80s with drops to low 60s

Sleep Study on Oct. 20th with CPap and BiPap:
55 apneas/hour
Average oxygen level 92 with drops to 83

Sleep Study on Nov. 2nd with BiPap AutoSV Advanced:
30-35 apneas/hour
Average oxygen level 94.9

Clearly, the BiPap AutoSV Advanced machine is necessary. On Nov. 6th, the doctor from the Sleep Lab wrote a prescription for the machine and was told a machine would be delivered to our home. We anxiously waited for the delivery of the machine, however, it never came. Instead we unexpectedly received a letter on Nov. 14th (but dated Nov. 7th) from our insurance company that we are not covered for the machine. Frustrated that it took a week for the denial letter to reach us, all the while Kyle suffers. My husband immediately called the sleep lab for a copy of the prescription and I searched for medical supply companies that rent the machine because Kyle has waited long enough for his therapy.

We ended up renting the machine from a reputable company in Nevada and received it Nov. 17th. Their web address is medtoyou.com. Awesome service and fair prices.

-Christy (Kyle's mom)

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.