This kid is just amazing. Earlier today she was switched over from the oscillator to the ventilator and she has done incredibly well. So well in fact, that the plan is to extubate her tomorrow. That is really amazing considering how ugly her lungs looked five days ago. There really is nothing else to say but she keeps amazing those who are in charge of her care.

Rafi was being given a drug that literally paralyzed her while she was intubated. We took her off that drug this afternoon and gave her some propofol to keep her nice and sedated. We really don’t want Rafi moving around much for fear of her hurting herself while she has the tube in her. Mainly the tube could hurt the inside of her mouth and her throat pretty badly. In switching her over from the paralytic, Rafi became mildly lucid as she moved around. It was great to see. She could answer yes and no questions.

Later on, as we were repeatedly increasing the dosage of the propofol to higher and higher levels to keep her sedated, Rafi was very clearly and appropriately responding to yes and no questions. This surprised the fellow and the attending, being that her dosage was so high. To give you an idea, the fellow was telling us how 150 should be plenty on the dosage because most children did well on that. We laughed at him. At 200, she was answering yes and no questions. We asked Rafi is she wanted Tylenol, she shakes her head yes. Do you want to watch The Incredibles, she shakes her head no. No one ever listens when we tell them she will need larger amounts of sedation.

If all goes well tomorrow, we could be back in our room on 5D by Monday evening. That is incredible considering they told us the average stay on 5C was two to three weeks. Tomorrow will be Rafi’s sixth day.