Day 33

It's official.  Our daughter is nocturnal.  I'll take it though.  I was really worried yesterday when Emerson decided to sleep all day long.  She would wake up only briefly, stare around for a minute and then go back to sleep.  This was worrisome because she is not on the serious medication that should be making her so tired; however, for the past three NIGHTS she has been awake from about 10:30 p.m. until 8:30 a.m.  Even when they give her extra doses of something to calm her down or help her sleep... nope!  She stares wide eyed for the entire 8-10 hours.  I am fine with this.  I know, it sounds like most parents' nightmare, but I am just happy that she has SOLID AWAKE TIME. 

Last night, I tried to stay up and party with her.  I tried to get her to turn to me intentionally, but I don't know that she did.  She does look around more though.  And I did get her to focus on me for a long period of time last night.  I was trying to get her to do her "tricks."  I asked her to stick out her tongue and I would stick my tongue out at her... nothing.  Well, she would start chewing, but she loves to chew on her ET tube, so I don't think it was an attempt to respond to me.  I asked her to kick, and she moved her legs a little bit- they were in her moon boots (splints) at the time- but, again, I don't want to say that she definitely responded.  I am not convinced that it was a response to my "command."  Still, I then started opening and closing my hands and asked Emmy where her hands were.  After about a minute, she started moving her right hand up and down.  I asked if she wanted to sing her "Open Shut them song" and started doing it and as I did it, she would move her right hand up and down.  I did this numerous times and she followed along.  Then I ran to get nurses to be my witnesses, and she didn't really do it.  She opened and closed her hand somewhat spontaneously, which then made me question altogether whether she was responding to me or just moving that hand.  It was 1:00a.m. and I was too tired to figure it out.  I woke up with my head on her bed- and a neck cramp- at 2:00.  She was awake, staring.  I gave up and went to bed.  I woke up, though, at 4:00 and 5:30 and 6:30.  She was still awake and staring.  Sometimes she would be wiggling- not squirming- just wiggling her legs back and forth.  I am happy that she was awake last night but not in too much pain, I don't think, because she did not have the bad tremors that she gets when she is exhibiting withdrawal pain. 

As for other, more medical, stuff, this is the first time that Emerson has gone over 24 hours with an age appropriate heart rate.  She has not been tachycardic!  Also, she is down to 13.1 kg.  Her dry weight was 11.3 kg.  We have less than 2 kg to go until she will be at the weight one of the doctors wants in order to extubate.  Getting her weight down is one requirement.  Another is getting her off of her Phenobarb.  Neuro said we will continue to wean her and at the rate they are weaning her, so she should be off of it Monday.  IF she meets all other requirements for extubation before that, because we know she will be weaned Monday, they would consider extubating if she is close to being off the Phenobarb but not quite there.  Still, we are NOT planning on extubating in the next 36 hours or anything.  Another extubation prerequisite will be clear lungs.  We have changed her vent settings and continue with the CPT- but not as often because her lungs are clearing up- and each day her x-ray looks better.  Still, her breathing is slightly diminished at the bases, so we want to keep improving.  Lastly, we want to rev up Emmy's stomach so it is ready for bigger feeds- and feeds by mouth instead of a tube.  We are going to try to get her up to 45ccs of formula before extubation, or as close to that as we can get.  Emmy is slightly malnourished, which is common for her condition.  We are bumping up her feeds from 4ccs of formula every four hours to 9ccs every four hours later today (This will be day two? of the formula).  If she handles that well, we will check with surgery and continue increasing feeds this weekend.  We pull out what is in her stomach which is referred to as "residual" and that helps to determine how much is moving and how fast.  We don't want it to build up too much.  Her intestines and stomach are still, understandably, slow.  But let me tell you, when she passes something in that ostemy bag, it could practically wake up the kid next door. I laugh every time because it startles me it is so loud.  (I can't wait for Emerson to read this part when she is older and get totally embarrassed that I even mentioned this).  I laugh because when Emmy would do that at home, she used to look at us and giggle, so I'd like to think she that if she were feeling better, she would laugh at that sound.  Gas is always funny- even in the PICU at day 33 :).