One fewer hole!

I need to begin by saying I am really sad, at this moment, not for Emmy because she is doing fine today, but because there is a little four year old a few doors down who has been fighting Leukemia and who is now, it seems, fighting something even more difficult.  It appears to be a very serious situation and my chest just aches right now thinking about what this little girl and her family have been through.  When we first arrived 14 days ago, her family happened to be here briefly and was so worried about Emerson but did not know her name, so they just prayed for the sick little girl a few doors down.   Now it is our turn to do the same.  Your thoughts and prayers have done so much for our family the past two weeks; if you have time to add this little girl and her family to your thoughts and prayers,we hope it can help them like it has helped us. 

Emerson has been okay today.  She is now going through withdrawal from all of these necessary drugs, and it is difficult for Brian and me to see it happen. They are managing it with Morphine and Adavan right now, but it will be a long process and many long days as she goes through withdrawal while trying to get better.  We see her get teary, blotchy, irritated (squinting, flaring nostrils, higher heart rate), and today she developed a fever.  It is 101.3, so they gave her baby Tylenol.  It has not come down yet.  They also cultured EVERYTHING to make sure it is not an infection, but they are thinking it is withdrawal. Her withdrawal score is between a 2 and 5.  It is not an exact science for person in Emerson's condition.  A score of 8 or above is high and means that we would stop weaning her off Versed and actually go up on the dosage, but she is not there yet, luckily.

Her weight is down to 14.7, and her feeds are up to 10ccs an hour.  This is a big deal because they would not increase the formula unless she was handling it well.  We are really trying to get a poop out of her. 

So what's with the title of this post?  Well, Emmy not only had her wound vac changed today, but the surgeons also removed her right chest tube.  Yea!  I just can't wait until we can close up more holes in our baby.  We still have not managed to hold her :(.  We are hoping maybe tomorrow we can now that one side of the bed is easier to access because the chest tube is gone. 

One last, recent development.  Dr. Ubogi came into the waiting area during Emerson's procedure very excited.  He showed me a slip of paper that said Emerson Roessler 51.8.  He said this was great news.  Her Phenobarb level is really high; we want it more like a 30.  I just stared at him.  I wanted to be excited, but why are we so happy that Emerson has too much of her anti-seizure medicine in her system?  He said he is relieved because ANYONE with a level this high could not wake up.  The reason Emmy is not awake is, possiblity, because of her Phenobarb level.  So we are not giving her anymore today, and we are checking her levels tomorrow, and we hope to see her able to wake up much more after this.  I was relieved, but it seemed to me that everyone was so happy with her progress- I mean, she opened her eyes half way today and they acted like she just got up and ran a lap around the room.  So I guess, while this is great, I was surprised to find out that we were even concerned.  If she is able to wake up more and do well coming off of this Phenobarb, we should be able to better assess whether there is brain damage and if she does well, we will be even closer to extubating her because she needs to be awake for that to happen.

I want to be selfish right now because I am getting that desperate, discouraged feeling again.  It starts as a pit in my stomach and creeps into my chest leaving an aching pain that rises as burning tears in my throat because I want sooo badly to see she is okay, to see greater progress. I want to totally focus on Emerson only, but for now SHE IS OKAY and the girl down the hall is not.  I am distracted by what the family a few doors down is going through and, tonight, I need all of the positive energy we can muster to go towards them for a while.