Day 23: The beginning of that slow road to recovery (again)...we hope

So here we are again.  We are very slowly starting to wean Emerson from her sedatives.  She will start receiving Methadone now every six hours as we try to slowly wean her from her Morphine and Versed.  Emmy will remain on her Zosyn- an antibiotic- because of the fevers... which brings us to our newest worry.

Remember yesterday when we said we weren't worried about the fevers because surgery thought they were still an effect of the recovery?  Well, now that it has been 72 hours since the procedure, we are a little worried.  The PICU team and Infectious Disease are working together to figure out why she has these fevers.  It could be something abdominal or fungal, and we continue to culture her to see if it is infectious.  Good news is that so far the cultures keep coming back negative.  The other piece of good news is that Emerson's white blood cell count has remained steady.  We REALLY want these fevers to stop though.  They are a sign that something is not right and on top of that, it complicates things as she gets weaned from these drugs because fever is a withdrawal symptoms, but because she is having fevers before we even begin to wean her, we will not know if the fever is a sign of withdrawal or something else going on.  It makes Brian and me nervous that something else could come of this, but we just have to wait and see.  The doctor was talking about ordering a CMP- a Comprehensive Metabolic Panal-to give a more comprehensive look at what is going on with her organs etc., instead of just the cultures to look for infection and blood work to look at her hemoglobin.  We may do the CMP tomorrow.

Emerson is still edematous, and her stomach is distended but soft.  All of this is most likely because she is still retaining fluid that the wound vac used to help her get rid of.  For that reason, she will be on the Lasiks again today with the goal of a negative fluid balance tomorrow.  In the past 24 hours she has had 1.5L in and 1.2L out.  That leaves a positive fluid balance.  We want the liters out to be greater than the liters in to show Emerson is getting rid of her excess fluid. 

Emerson's picc line was a success, but they couldn't put in a double lumen- the lumen is the tube that comes out of the arm that we put her meds and stuff into- because Emerson is so small that she requires a 4 French ( the size of the tube threaded into Emerson's arm).  Not all of Emerson's meds are compatable with one another though, so they can't all go through a single lumen.  This means that the IJ (internal jugular) central line has to remain until we get Emmy off some of the meds that are not compatible with one another. 

So, goals for today:  wake up Emerson and stop the fevers.  Emmy is moving again and responding to our voices.  We will take turns reading her books, reading her emails, singing, doing her OT exercises and probably doin some long division or something.  And we will probably start yelling at her and threatening to take away those puppies and cars we have been promising her if she starts to get febrile again. 

Goals for the week:  Get her weaned from the sedatives and pain meds so that 1) we can get rid of the IJ central line and 2) we can start talking about EXTUBATION again!!