Thursday, February 19, 2009

Day One

Elena is still in a considerable amount of pain, but she's much improved since yesterday. She can sleep for an hour at a time, but her startle response keeps her from resting well. For those who don't know, people with spastic CP "startle" like you or I do, when surprised, or scared, but it's much more intense of a muscle spasm--and for someone who just had back/nerve surgery, that spasm HURTS LIKE HELL. And Elena typically does it after 20-30 minutes of sleeping, so she doesn't rest well.
She was allowed to "move" this afternoon (lying on one side or the other) but the transition is very painful. I was also allowed to hold her, but it was difficult to move her with all her cords attached, and it's a 2+ person job b/c we have to keep her "flat" during the transfer. She rested well in my arms though, so I was thankful.
We are also having a problem with nausea...the pain meds keep her sort of comfortable, but she can't keep even small amounts of liquids taken by mouth b/c of them. She now has regular anti-nausea medication, but she has to take them 8 hours apart, which is a long time. She hasn't ingested anything since Tuesday night, but we're hoping tonight she can keep enough liquid down to justify trying solid food (cracker(s)). Once she's able to eat something, I think she'll start turning a corner. PT starts tomorrow (it was supposed to start today, but E was resting when the therapist stopped by).
Her feet also hurt. This is not surprising after cutting nerves--I guess it's a painful tingle, felt more in her right foot than the left (b/c more nerves were cut on that side). She does not like to be touched below the knee, especially on her feet, and says it hurts. But after some whining, she's relatively quiet. Lots of books, lots of videos. She's a very good patient.
Overall her status update is great. She is exactly where her doctors thought she would be. That's great, but as a parent, you wish your child wasn't hurting...


Fancy Pancakes said...

Glad she is resting at least a little. I hope today goes well. Thanks for keeping us posted... hope you'll continue to do so.

Anonymous said...

Thanks for posting, Amy. We care so much about what's happening with all of you, and it's generous of you to share. We love Elena, and we're so grateful that she has such brave parents who are willing to go through all of this with her and for her. Bon courage. We're here. Lib