Day 31

One month ago today, on September 25, we arrived at Loyola with a VERY sick little girl.  In those 31 days she fought for her life and we are past, I think (and the doctors think), that part of her illness.  She fought off the illness and won.  Her kidneys recovered; her liver recovered; she lost over 20 pounds of excess fluid; her stomach and bowels recovered (after a surgery), and now we wait for her lungs and brain to recover not only from the impact of the illness, but they have to recover from everything we did to help her recover:  they have to recover from the drugs, the ventilator and the rest that have weakened her.  It is a slow recovery process, but there are baby steps of progress. 

Emerson was awake, alert and comfortable all day yesterday.  Last night, she was wide awake as well, but she was uncomfortable.  She has quite a bit of gas right now- which is good for her recovering intestines- and she also has withdrawal symptoms.  We kept trying to get her comfortable last night and supplementing with Morphine and Versed to make her comfortable, but on top of all that, she also had chest physical therapy every two hours.  So even after she got comfortable, she would then get awoken and uncomfortable again.  So... finally, at about 7:00 this morning, the drugs worked.  We stopped C.P.T. for the morning to let her rest.  I was hopoing she would get a good nap and wake up this afternoon ready to hang out like yesterday, but her pupils look REALLY small.  I am guessing she is going to be sleeping most, if not all, of this afternoon.  I am kinda bummed about that because I think it is so important to have her awake and alert and interacting with us, but we are going to have to play around with these meds.  We want her awake... but we want her comfortable.  During rounds we adjusted her pain and sedation medication schedule- we are not weaning today, we just adjusted the schedule- so we'll see how that goes. 

We are trying to prepare her for another extubation, but we are being extremely cautious.  We want her awake atelectasisand alert, like yesterday... or better if possible, but we want her lungs in  better shape, too.  Emmy's x-rays still show atelectasis which is keeping her from taking larger breaths.  We are playing with her vent settings and continuing with the CPT and clearning junk we hear in her lungs afterwards to prepare for another extubation.  We are hoping, I think, that she will look better at the end of the week and we can discuss another extubation more seriously at that time. 

So for today... it might be nap time.  I am really hoping we can figure out a schedule with the pain and sedation medication so that Emerson can be comfortable AND awake, but for right now, she is comfortable and sleeping after having been awake for about 36 hours.