Monday, April 25, 2011

Sleep Apnea

Kalisha has always been a light sleeper. She would wake up if she heard me get up in the night, even if I didn't turn on a light. Our bedrooms were at oppisite ends of the apartment, so I knew she was never in that deep sleep that her body needed.
She has never been an early riser. When she was in school, she did not want to get out of bed in the morning. Occasionally, in elementary school, a teacher would send a note home saying that Kalisha would put her head on her desk and fall asleep. It became an every morning battle to get her up in time to catch the bus. One morning, in junior high, she was awake but dilly-dallied long enough that she missed the bus...again. I had told her that the next time it happened, I would take her to school in her pajamas and slippers. I did. She got out of the car wearing her pajamas (they looked like clothes, okay?) and her slippers. She had stuffed her shoes and socks in her book bag so she could change later, at school. *Remember, the name of this blog is getting it right, occasionally, not getting it right, all the time. In retrospect, I am certain that was not the way to handle the situation, but just because your child has special needs, doesn't mean that you never get angry with them.
After she was out of school, she would always schedule appointments after 9am or if she was filling out an application, she would say she wasn't available until after 10am. Her family doctor suggested a sleep study to determine if she had sleep apnea. The doctor reassured Kalisha that it was an easy test and she just had to sleep. Right!!
First, I had to convince her to even take the test and as the date grew closer, she became more resistant. We did get to the clinic in the early evening and she gets the prize for asking the most questions of the technicians who were hooking her up. They gave me permission to stay with her all night. I tried to get comfortable in a recliner and sleep. WHAT WAS I THINKING?? Here's the running dialogue form the next eight hours:
"I can't sleep like this."
 "I never sleep on my back."
 "What time is it?"
"These wires bother me."
"My back hurts."
"What time is it?"
"I can't sleep on my back anymore."
"I really want to go home to my bed."
"I'm thirsty."
"I'm cold."
"I don't want them to watch me sleep."
"What time is it."
"I'm not going to wear anything on my face, anyway."
"I want to roll over."
"My back hurts."

After several hours of this,  I was saying, "What time is it???"
She (we) did finally make it through the night. Her doctor called a few days later to tell us that they didn't get the best results from the tests (surprise) and we needed to schedule another appointment for another night. The chances of that happening were somewhere between zero and non-existent, so they would just have to read what they already had. The results were sent to a neurologist who called to tell me that Kalisha had 'severe sleep apnea' and definitely needed to wear the mask at night.
Kalisha listened as her doctor told her all of the serious things that can happen if she didn't treat the apnea. Kalisha listened, nodded her head and as we walked out, she said,"I'm still not wearing anything on my face at night."
While visiting my cousin, he described the benefits he experienced after using the C-PAP machine. Kalisha listened intently as he said he now slept really well all night, he had lots more energy, he didn't nap all morning and he had lost 40 pounds! I was watching her face as she quizzed him about it and I thought maybe she would reconsider.
Needless to say, she didn't. She is still a light sleeper and if she doesn't have an appointment in the morning, she spends until noon napping on the couch. We have come to an agreement. Until they invent something less constrictive for people with sensory issues, she will continue to sleep and snore as she always has and if it causes her to die young, we will meet in heaven.

2 comments:

  1. How long ago was this sleep study? i'm a veteran of at least 5, some in a lab, some in a bedroom-like setting. The current go-arround, insurance would not allow me to go in for the study, but required me to wear a monitor at home and not use my CPAP. (i lost 2 days, with stress & sleep deprivation, so they could officially know that yes, i do still have apnea!) There's a wide variety of masks, and i look forward to my new, barely noticable headgear tonight, easy on, easy off, with nasal pillows instead of a traditional mask - be sure she asks for that, because it's not often offered. i can't function without my CPAP. (and it helps to not have to leave home until 11 or 12 also.)

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  2. Jim uses a CPAP and it has been a life saver for him -- and for me too because I was always waking up when I would hear him stop breathing because he had sleep apnea.

    When Jim started telling me that I was snoring, before I went to the doctor about it I tried something that Shirley Droege Walter had told me. She said that her husband Ron just slept on two pillows for his snoring. So I tried it and it worked!! So maybe sleeping on two pillows would help Kalisha sleep more soundly. Worth a try!

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