Thursday, October 28, 2010

Sleep Study Update

Hope's sleep study went very well. When we arrived we were asked what time Hope normally goes to sleep. She normally doesn't go to bed until somewhere between 10pm and 12am. She sleeps about 6-8 hours each night and then takes an hour or two nap in the afternoon. This kid doesn't need much sleep. The technician wanted to capture 6 hours of data and so they wanted to put Hope to bed sooner than her normal bed time. At about 8pm they started hooking up all the electrodes and so Hope really couldn't get out of bed after that point. She is used to being cuddled and rocked before her 10pm bedtime so she didn't like not having that.

She cried and whined until about 11 pm and then fell asleep about 12am. They turned her oxygen off and turned her vent pressure down from 12 to 8. Hope didn't even notice. We figured that in order to get all the data they wanted we would be staying the full time (until 7am). Hope had a different idea though. At about 3am Hope woke back up. We tried to let her fall back asleep until about 4am at which point they decided to end the study. They felt they had plenty of "proof" that she did well with everything, so we packed up and headed home.

We haven't heard from her pulmonologist yet to formally discuss the study but they paged the doctor and they were comfortable sending Hope home on the reduced settings. We don't know what the official plan is from here but the next step is to schedule a bronchoscopy for Hope to see if her airway is less floppy than it used to be.

Monday, October 25, 2010

Hope's 300th Blog Entry

In honor of the 300th post on Hope's blog, I decided to post some recent pictures of the cutiepie herself. Please, brace yourself, there is about to be a cute overload!!!!

Hanging out with Great-Grandma

Hello, I'm waiting for some food to taste

Hope's Mommy put some of Grandma R's applesauce on Hope's tongue... her eyes got HUGE and then....

Super big smile. She LOVES the applesauce (rightfully so)

The. Cutest. Girl. EVER

I think this was mid "bouncey bouncey"

She just doesn't stop smiling

Aunt Em, you are so funny!

Hope is SOOO big

So much fun and cuteness... Hope must sleep

Tuesday, October 19, 2010

Sleep Study

Hope is in the middle of a sleep study as I type.... although as you can tell from the picture, she's not so keen on the sleeping part of the sleep study. Truth be told, she's not so keen on the entire idea of a sleep study. The black band on her head is covering the 10-15 electrodes that are stuck all over her head. She's had them on for about 2 1/2 hours and has just recently stopped crying about the whole situation.
The point of the sleep study is to lower her ventilator setting and see how she does. They've lowered her PEEP (the pressure that is in the circuit when she exhales in order to help keep her airway open) from 12 to 8 and she is doing great with it. They've also turned off her oxygen and she is doing great with that change too. Now if we could just get her to sleep.... :)