We were supposed to have Rafi extubated yesterday. Yet, today she was scheduled to have her 60 day biopsies. After much discussion with the doctors and amongst ourselves, we all decided that it was best to leave Rafi intubated until today. She was going to have to be sedated for the biopsies so we all decided it was in Rafi’s best interest to keep her intubated through the biopsies. With that in mind, we were planning on extubating this afternoon. That didn’t happen. The new PICU attending felt it best to give Rafi one more night on the ventilator to try and even out some of her blood gases. In the scheme of things what’s one more night, right?

Well, it is turning out to be a nightmare. Poor Rafi wants that tube out of her mouth so badly. The doctors have cut back her sedatives and Rafi is asleep for twenty minutes at a time before she is up for twenty minutes. When awake, she is visibly upset at having ot be in bed with the tube. I’ve watched her cry and hold up her arms for me to pick her up. I really with I could pick her up and take away some of the fear. Even though she is on some pretty potent sedatives, she is very lucid. She answers yes and no questions appropriately and the PICU attending says she “isn’t a cheap date”. Only one more night. It could be worse.

What I can tell you at this point, is that the quality of Rafi’s skin has improved. Some of that is due to inactivity for sure, but we can see a distinct change in her skin. It’s very exciting. I haven’t wanted to report things that I hoped to see. I wanted to report things that I know.

Until tomorrow……..