Cytotoxic Precautions

It has been a rough couple of days for sweet little Sophia.  The hospital is definitely not like home....lots of people in and out, weird noises, and therapy sessions that are most uncomfortable.  She has been more fussy/restless and in an attempt to change the scenery we took a "walk" last night.  By "walk" I mean that we were able to roam the darkened hallways of the third floor several times as the hugs monitor attached to Sophie's ankle will go off should we get close the the elevator. 

As we walked, I noticed many doors with hanging orange signs that read CYTOTOXIC PRECAUTIONS.  Curious as to what that meant and why the nurses entering the room looked like responders to a HAZMAT crisis I googled the term cytotoxic. Cytotoxic drugs are intended primarily for the treatment of cancer. They are known to be highly toxic to cells, principally through their action on cell reproduction. Many have proved to be carcinogens, mutagens or teratogens. I realized at that time that this floor has at least 1/2 of its patients battling some type of cancer.

I began thinking about Sophie and all that we have been through with her.  I wondered what the "sign" outside of her door would say?  One can look at the orange signs outside of the doors on this floor and immediately know what is wrong with that child, have guidelines to know how to "medically' treat him/her, and precautions in place to protect the child and the medical staff.  In all five of our hospitalizations no one has been able to immediately know what is wrong with Sophie, seem to have no guidelines on how to "medically" treat her, and no clear-cut procedures in place to protect her or those treating her.  Most of the advice we get is muddied, unclear, conflicted with what other doctors think and believe.  So much of our experience has been "watch, wait, see". 

Would the sign on her door say, "Sensory Processing Disorder", "Severe Refluxer", "Autistic", "Delayed", "Normal"???? At this point I am not sure.  What I do know is that after 6 days in the hospital our sweet baby is still: a) taking between 40-60 ml (1-2 ounces) at a feed (with a sporadic 90-110 ml every once in a while), b) slowly losing weight  c) crying more  d) sleeping less.  Should our CARE conference tomorrow not yield a "G-tube" decision I wonder what we will walk out of here with?  What will 7 days in the hospital have gotten us?  I can think of a few things:  a) time away from Cole b) another huge medical bill  c) high levels of stress d) nothing.

We should know more after 4 p.m. tomorrow.  Still praying for wisdom, strength, and the clarity to see the "right" choice for Sophie.