Our first small set backs but nothing too bad

We are sorry we did not post more yesterday. We are going to try to be better today. We have had some small developments. It is to be expected that as Emerson gets better and better, we will be weaning and pushing and, overall, trying things that may work or may indicate that we have to slow down. There is a bit of trial and error, but nothing drastic. Brian and I are very happy with all of the doctors and the way each one pushes Emmy to get better. So here is what we have seen in the last 24 hours:

Yesterday morning, the surgical team water sealed her left chest tube because she does not put out much from there anymore. This was exciting, but short-lived. The chest xray showed fluid build up there, so surgical residents rushed back in to turn the suction on and canceled the procedure to remove that chest tube today. The pediatric nurses have said that the left tube is not draining at all on that side since then, though, and the fluid is not really around the ribs as much as in the lungs. Her left lung is partially collapsed now as the right recovers, but she is still able to breath partly on her own. She is receiving her percussion therapy as we speak to break up all of the mucus in there.

Emmy has not needed blood products for 72 hours now. As of yesterday,she was completely off the sedative phenanlyl as well. This is/was all good. However, last night, her temperature was trending up slightly and she had a period where her heart rate increased and her pupils got bigger. Her breaths per minute also increased. This is a sign that she is waking up and/ or that she is in pain. Everyone here is very sensitive about kids being in pain, so they gave her a dose of phentanyl early this morning because they want to make sure she is not in pain. As a parent, this is really odd. On the one hand, it is good that she is waking up a bit more- she is supposed to be doing that so we can extubate her- and if she was in pain, it is also a good neurological sign that she responds to it. But then I catch myself happy about my baby being in pain??! I don't want that. So it is tricky. We will talk to the attending at rounds and figure out what we are going to do today.

They have to take her off the ventilator and manually give her breaths and then pause and suction with a bigger tube than what is currently in her after her percussion therapy because the mucus is so big and thick. This is good. It is expected that this would happen and they need to get all this out of her before we can extubate. It sounds like a thunderstorm when they succtioning her. It is a little scary- for the parents only, the nurses are all over it- when she struggles to breath when a mucus ball gets the best of her. Good news is that they still have her on the lowest possible setting for the ventilator and Emmy is handling is like a champ! Oh yeah, and when they suction her, Emmy gets mad. Sometimes her right hand moves a bit and most of the time, her mouth moves as if she is trying to protest. It is so cute. When she was well and she didn't want something, she would shake her head no and swing her right arm to clear the way or clear her area to show she was done with us or with her food or whatever. It was really funny to see her so assertive. I imagine that is what she is trying to do now.

The head of the neuro team was back again yesterday. I like to give him a hard time because he cannot dole out good news like others do and I want it from him more than anyone else at this point, but I have certainly come to understand why he, of all people, cannot make promises. Still, he surprised me yesterday when he said, before his "wait and see" comment, that there are small improvements. I smiled at that guy.

More later...