The C Word – A New Battle Day 14 - Now What?

After the girls went to bed I went and sat outside and did my praying and crying out to God.  Voicing everything I had in me as I tried to reconcile with all the events of the past two weeks. Then I climbed into bed for some rest.  I was thankful for a good night of sleep. 

I returned to the hospital at around 8AM to find George sleeping quite soundly.  I did not interrupt his sleep as that would start soon enough as nurses made their first morning rounds.  I inquired with his nurse about the CDIF results, she checked the computer and they had not come in yet.  They did shortly after that.  It turns out that George has colitis AND CDIF.   One probably begat the other.  As soon as CDIF is determined, paper gowns and gloves are donned by anyone entering the room.  Oh joy!  At least a mask is not required. 

The infectious disease doctor was brought in for consult.  He looked over George’s history and then came and paid a visit.  We know from experience with Mom that Vancomycin is the drug of choice for CDIF.  However, that won’t work on the colitis.  So George has two forms of medication to take.  Something via the feeding tube for the colitis – and vancomycin via the G-tube for the CDIF (that puts it right into the stomach so it can feed right into the intestinal tract).  The infections disease doctor is not sure how these two will work in tandem with one another because the one for the colitis could actually activate the one for the CDIF.  Very confusing!

George was scheduled for a CT scan today and, indeed, had received the first bottle of barium.  Then Dr. B put that on hold because he believes the issues George is having stem from the colitis and CDIF.  They will check George tomorrow to see if he is responding to the medications and may still do a CT scan.  Just not today.  We are bracing for him to expel the barium!!  A CT scan is still not out of the question for tomorrow or the next day. 

George inquired about the discharge date changing because he doesn’t think Friday will work but Dr. B says that it could still work out.  Have to see how George is doing on the antibacterial meds.  I would not be surprised if it took just a tad bit longer to ensure that everything is lined up.  Doctor still doesn’t know exactly what “equipment” and supplies will be needed at home and the case manager will need that in order to help me get those set up for home delivery, as well as contact an agency for a home health nurse. 

The dietician came in today and wants all of George’s food intake recorded for 3 days as Dr. B wants to see caloric intake in order to determine if TPN can be stopped.  Unless something huge happens, the caloric intake will be very, very low.  The nurse encouraged George to order up a few things and see if he can get some nutrition via mouth. He did order a variety of things for dinner and ate about half of what he ordered (rice, mandarin oranges, applesauce, and milk).  That was a REALLY good start!   Dr. B says the PIKK line will come out before going home - - so it may take a bit before he eats enough to get the TPN out!  I think as the TPN is dialed down the feeding tube starts getting dialed up.  So far he has been on a very slow feed for that. 

He was more alert this afternoon than he has been in a while.  Even turned on the TV for a short bit.  We’ve done a little chatting.  I started reading a book by Joel Osteen to him as he rested.  He is anxious again about my going home so will ask for Ativan before I leave this evening.  Last night when I left, CNA Ana did a fabulous job helping him in and out of bed.  She is passionate about patient care. 

While today offered yet another setback, it is ending a little more positive.  The unfortunate thing about CDIF is it takes quite a while to get under control – and once you have it you are more prone to subsequent bouts of it.  I will need to go home and do a thorough cleaning of bedding and clothes as we are not 100% sure that he hasn’t had this for some time.  It is likely that the incident started here – but just to be on the safe side.  There will be a LOT of handwashing – as the antibacterial gels don’t get rid of it…. Mainly bleach, water and soap.  (That’s also why I am going home at night, to shower and wash my body and hair after being semi-exposed to him all day.) 

I am also finding I am having to consider some tough choices about what I need to be doing in not only the coming days and weeks but down the road.  That made for an emotional mess of me this morning.  The CancerCare Point social worker called me and I was in the midst of a tough email.  I could barely talk to her.  When she asked “what do you need?”  And all I could say is, “I don’t know what I need.”  It’s one of those things that you cannot describe.  You cannot put into words.  It’s sort of like when George tells the story about the initial diagnosis and the doctors answering questions.  He says, “They’ll answer every questions you ask them - - and not a one that you don’t!”  It’s like that now – we don’t always know what questions we need to ask, we aren’t sure where things are going and what we need because this is unchartered territory for us.  Our lives are being turned upside down and we are trying to figure out how to land with our feet on the ground – but we’re still up in the air and can’t see the ground just yet.