Catch 22

Get used to the obvious lit references when the English teacher writes.  Only, I don't have any energy to reference anything original, most of them are practically cliches that I would consider telling my own students not to use.

The title of this post is in reference to what Brian and I are experiencing right now.  We are in the middle of- what many have referred to as- the hardest stage for parents.  Emerson has been awake/aware/aggitated much more today.  Here is why it is good:  we want her awake- it is a good neurological sign.  In addition, we need her to be more awake in order to one day get extubated.  She is also able to show that she knows we are here and move, which, again, are good neurological signs.  Apparently, we WANT her to react.  Here is what is so horrible:  most of her reactions.  Emmy gets really, really upset about the tube in her mouth.  She will chew it and chew it and get frustrated.  She'll open her eyes and chew it and get all bubbly at the mouth and soon she becomes blotchy in the face and starts crying.  It is absolutely heart breaking.  I HATE that she is crying. She cries about the tube and she tears up when they have to clear her ventilator and she gags.  She sometimes gags herself and coughs because of the tube and then cries.  We do not hear the crying because of the ventilator, but we see it.  We are told again and again that these are normal responses and good responses but I hate to see it.  I rub her hair and sing to her and rub her hand and tell her over and over, "I know, I know.  I know what you are asking.  I know you don't like this.  I am so sorry."  I just want to cry with her.  I wish I could just curl up with her and hug her and make her feel better. 

But I can't.

Emerson also started vomiting dark green bile this morning.  Not like a little bit, either.   She is filling containers with it.  We have had to change her bedding and bathe her and change her tape that holds tubes in her face 3 times.  And then she cries and gets upset and that causes her to vomit more.  At first, they thought it could be because she is waking up and reacting to the meds.  They stopped her feeds.  Now, she still does it even when nothing is in her stomach, so they are thinking it could be from her intestines.  One person thinks it is an illius, which is an intestinal blockage that inhibits the bowel from moving.  This is caused by any number of things Emmy has been through, including the heavy use of narcodics she is currently being weaned from.  The infectious disease doctor has ordered a bunch more tests and cultures because they want to rule out other infections, including one that could be causing stomach pain.  Surgery has talked about it possibly being another infection.  In short, we don't actually know why she is doing this but no one seems to think it is serious... except me.  Everyone is treating this as a little bump, something that is not serious... until it is serious. 

Let me say I love this place and I trust the people here.  I don't want to be anywhere else, but I am totally fatigued from having to keep my emotions in check today as I try to sit with my daughter as she goes through this.  I am soooo sad and tearing as I write this, and I am just so tired.  I am so tired of my daughter having to suffer anymore.  I just want it to be over.  I WANT IT TO BE OVER AND HAVE MY LITTLE GIRL BACK!!! 

I am so grateful she is waking up, that she is more aware, that she reacts to outside stimuli.  I just wish that she didn't have to go through all this while she wakes up.