I Can't Even Begin to Tell you...

How Hard this is on the family.  The following was posted by my daughter and says it best in her own words.

5/14

That was THE WORST ordeal we've been through thus far. Simple procedure. Been through it before. Except this time she was still asleep when we were brought back to her bedside. We were told we could start waking her up. BAD IDEA. She started off as she normally did being grumpy, not wanting to be touched then eventually calling for me. But then as I held her she started fighting again, pushing away, screaming, crying. She clawed me, leaving a small mark on my hand. OR called for transport, thinking when we were back in the room She would calm down. I held her for the wheelchair ride up. She was rigid and screaming and fighting the whole way. I had to wrap her arms in her blanket to restrain her from hurting me or herself. Got to the room. Lay her in bed. She starts trying to throw herself from the bed, head first. Michael has me leave the room at this point for a break because this is wearing on me. I get a cup of coffee and sit down in the main concourse across from the elevators. Michael calls me within 30 minutes. She still has not calmed down and he needs my help. I come back to find that she's been clawing both Michael and herself and banging her head on the guardrail of her bed. At this point we have to fully restrain her... ourselves. So I lay down next to her and wrap my legs around her legs to keep her from kicking and hold on to each one of her little wrists, holding her hands apart, so she can't claw me or herself. At this point we've been fighting Lyllah for 30 to 45 minutes and we ask for her to be given something to calm her down. As the Oncology team begins to contact the operation and anesthesia doctors to make sure that what they want to give her won't make her condition worse, Lyllah continues to fight full force. I don't remember exactly what happened in what order but at one point I let go of one of Lyllah's hands to get a hold of her legs again and she stuck her thumb straight into her mouth and bit down like she was trying to bite it off. Another thing was her screaming "stupid!" and some obscenities and then crying "this is not me!" All I could do was hold her and pray. After another 45 minutes of waiting on the docs to put in an order for some calming meds, she finally passed out. At this point I was in a rocking chair, holding her. She slept for only about 5 minutes and Michael took her out of my arms to place her on her bed. She woke, whispering, asking for her blankie, tv, a drink and some food. Our sweet little was back just like that. She had to potty and her poor little legs were so worn out she couldn't even stand. She did eat (blueberry bagel with cream cheese and the top of a blueberry muffin and Apple juice box, "2 please"). We had her dressing change done (another fight but the poor thing was too exhausted to do much more than cry) and then she slept in my arms as we waited to be discharged. We're home now. Lyllah's awake and quiet, watching cartoons, holding her blankie, pretzels and sippy with water in it. 

Cathryn