Thursday, January 20, 2011 2:28 AM, CST

So the awake periods I wrote about last night, have now turned into periods of crying and sleeplessness. Earlier today Elizabeth started crying, out of no where, for no apparent reason. And Elizaebth is not a baby who crys for no reason. She is usually really great and only cries when something is wrong.  So we are not sure if she is hurting, uncomfortable, or just exhausted. She does it randomly and then stops. They have weaned down some of the sedation over the past few days, and she has been having the feeding issues, on top of obvious teething and now a major diaper rash, and of course the massive amount of pressure the vent is putting into her lungs. I mean she has tons of reasons to be uncomfortable, so I guess I shouldn't be surprised but it still doesnt make it fair for her to be so miserable.  She is still on  a fentanyl drip, pentabarb scheduled every 3 hours and as needed doses, clondadine patch, metadone and ativan. So I dont see how she could possibly be hurting with all those drugs, but at the same time I dont see how she is awake either on all those drugs. Its stressing me out! They keep telling me that she will be uncomfortable as they wean down sedation, but there is a difference between uncomfortable and miserable. She looks pitiful, and doesn't seem to be resting at all. She doesn't have a true sleep schedule and seems to have to have medication to get to sleep. She fights sleeping and when she does sleep its not even an hour before she is awake again. She keeps rubbing her eyes like she is tired and yawning alot. We are concerned that she may be having some withdrawl symptoms from where they have weaned down some of the sedation already.  I don't claim to know the answer to fix the issue, but there has to be a better approach then what is happening right now. Guess we will discuss it in the morning during rounds when the doctors who can make decisions are on, the people on tonight seem a little lost. And for some reason we keep getting random nurses at night... I HATE not having a consistant rotation of nurses who can get to know Elizabeth and her needs. I understand staffing and all that jazz, but when multiple nurses that have taken care of her before are working it makes sense to me to assign them to a kid they already have cared for, especially a kid who is here long term. Its just been the past 4 or 5 nights that this has happened but it drives me crazy. I always worry when someone "new to Elizabeth" is on. She is a special case and it just makes me more confident in their ability when they have cared for her multiple times. Sorry for the ranting, but thats our life these days :)