Friday, October 5, 2007

DD's sleep study, Take 2

It took a good hour to find a mask that would fit right. A baby mask got close but air leaked out and she freaked, cried for ages, complained of a tummy ache "from breathing all that air." You know, the whole 5 seconds she breathed it.

Eventually they found one that was an instant hit and she stopped the waterworks. It covers her nose and mouth instead of just the nose. Then she cried during the whole wiring set-up process but I eventually got her to stop with a bribe. I promised to get her little donuts this morning if she got through the night with the mask. What can I say? I was afraid she was disturbing the other patients with her incessant sobbing. Remember this was in a hospital, not a sleep lab, due to her age and some rule from the pulmonologist that I don't understand.

We got into bed, DD with the CPAP on and running. I kid you not the child was asleep in FIVE minutes. Not the usual 4 hours (I took a bag of multiple new skeins of yarn, prepared to start a project). It was SHOCKING. The hose came unplugged a few times during the night so they kept coming in to fix it, turning the light on each time. It was a long night, with her ending up sideways along her pillow and her feet in my armpits.

They gave us the boot before 6 a.m. Meg slept the entire night. EIGHT hours. Not her normal 3, maybe 4. EIGHT!!! She had to be woken up for us to leave. She would have slept longer.

So, now we wait for the peds pulmonologist to take a look at the computer readings done during the night and get home care out here and set her up with her CPAP machine! When we climbed into bed last night she called herself Papa's Girl because she was using a machine like him. Her sensory issues were shockingly NOT an issue with the mask, only the wires. The mask she was in control of (helping pick it, set it up, etc) and I think that helped tremendously.

It is currently 2:42 a.m. and I am exhausted. I had one good nap not too long after we got home from the hospital. I tried for another later but it didn't go well. I haven't been to bed. My pain level has been uncooperative, shall I say? Right now I'm on a double dose of Dilaudid, a Zanaflex, Depakote, and a few Topamax. So far, not much good. It's been a rough few days of EDS pain, worse than my head pain. I'm thinking the hospital bed threw what was already unhappy into a flare.


  1. I bet you are worn out and off the scale with pain lady. Try to rest the best you can. I know most days that is asking the impossible from our bodies. Keeping you in my prayers.

  2. Wow, that CPAP is really going to make a difference for her! Three to four hours was her normal sleep pattern?? She is going to be a different kid with a full night of sleep night after night.
    Now if we could just see a light at the end of the tunnel for your issues...we're praying! Please keep praying for my friend Cyndy too; I believe her doctor has finally given up. He wants her to go to NY, but her current problems with clots and fluid overload really doesn't have anything to do with neurological, and besides, their resources are at zero..they cannot afford a trip. She's about to give up on life, which you know is a scary place to be.
    Praying your pain lessens for the weekend..

  3. YEAH, you needed some good news. The quality sleep Meg with get with the CPAP is sure to make her a different child.

    (((HUGS))) I pray your pain will ease up soon.

  4. That is amazing. I'm really sorry you are in so much pain. Compared to your dose of meds mine is tiny. Probably my pain too. You are a brave inspiration for us.

  5. Bless you heart . Take care and get a good nights rest. Praying for you always . Roz