Friday, September 7, 2007

Brainaversary, daughter's sleep study

3 years ago today was the first of the brain surgeries. The beginning of...the end?

No news yet on what to do with this ginormous growth in my brain. Each day that comes and goes is an excruciating wait.

This afternoon I finally got the results on my 5 year old's sleep study that was done August 1st. Better late than never (that's what we get for living where there are only two pediatric pulmonologists). The doctor said she has serious apnea and severe disturbances and needs a second study to be fit properly for the CPAP and get her oxygen level under control. I can hardly wait to see if getting more than 3-4 hours of sleep for the first time in her life will bring any positive change in her behaviors. We were to have a meeting with the school psych, teacher, and principal this morning regarding her suspension last week and her IEP but the psych's grandmother had emergency surgery last night so we rescheduled for next Wednesday.


  1. OMG! I didn't know the wee one had sleep problems. I can speak from experience that oxygen deprivation brings with it many icky feelings. (Like panic attacks)I am waking up gasping, and I can't use my Cpap because it seems to be trying to blow out my candle. Thanks for being my friend.Why, Keesha is your brain growing? is it a tumor?

  2. Hi again from Margy!
    I've read a LOT about sleep apnea and the ties to behavior issues in kids...I'm betting your little one will be dramatically changed after just a few days on CPAP. Best of luck.
    Also, I must have missed it when I read through all your old blogs, but sometime can you re-blog about this current growth in your brain?
    My friend Cyndy almost died this weekend...completely unrelated to the Chiari or Ehler Danlos or any of her other diagnosis...she developed a FOUR INCH tumor in her superior vena cava, they think due to her pacemaker and the recent addition of a port-cath in her right chest. She began ballooning up with fluid the past couple weeks, but last week her face and neck swelled and turned purple, they finally found the clot with a CAT scan. They ran heparin for 24 hours, then were able to get 100% of the svc clot, and 60% of the one surrounding the port. Poor gal, if it isn't one thing, it's another, as you have also experienced. And now she sits in a hospital for a week, waiting for her surgeon to return and put in a different port (nobody else will touch her with a ten foot pole).
    Praying for you as you face all your many hurdles these days!

  3. Keesha, I pray things will get lined out quickly to help both you and your daughter. I hope she can get the new study done soon and they will do what is necessary to get her the sleep she requires. I am SURE she will have changes once she gets the rest she so desperately needs! I also have seen what sleep deprivation does, in a grieving family member. In her case, it gradually led to a true nervous breakdown. I am glad that you pushed through with the testing and that soon, they will get things right!!

    God bless you. You are always in my thoughts.

    yer pal, Virginia

  4. I tend to agree with margy about the sleep apnea issue. It did not take me long to improve physically once I got used to the mask. But at first, I would wake in the morning, and the mask had been ripped off in the middle of the night, and I had no recollection of it. After a while, I became addicted to the mask, and could not wait to go to bed, sleeping became such a beautiful thing. Now night time is a time of vivid nightmares, bright colors, repetitive voices, echos, themes, and waking gasping for air.I don't know if it is chemical, or lack of oxygen or both.