A blah day

It’s official.  Wednesday has surpassed Thursday in the craptastic day of the week competition.  Before August, Thursdays were traditionally our nemesis.  Mom’s sepsis; her seizure; Craig’s violent vomiting episodes – complete with an inevitable ER visit; and his Hickman incidents all fell on a Thursday.  When it seemed implausible – nay, impossible – for Thursday to be outdone in misery and general blahness, alas, its title has been stripped by craptastic Wednesday.  Why?  Because Wednesday is the first full day after pumping Craig with TPN.  Craig receives TPN every Monday evening; the bag is disconnected the following afternoon.  For the past several weeks, we’ve witnessed a dip in energy and a spike in pain and anxiety on the Wednesday following TPN.  His body is simply unable to handle an influx of fluid and nutrition.  The result:  balloon-sized pockets of fluid near the kidneys, increased pain near the abdomen, anxiety and sleepless nights/days, and over-all discomfort.  As Desiree said today, not many would recognize such a change.  We’ve become so in tune with Craig and his symptoms that even the smallest changes are noticeable.  Unfortunately with TPN, the changes are significant.

I wish we could go back to the days when receiving TPN was as natural as eating.  Never before had we considered this once trusted life source to be so painful.  Regardless, Craig would rather endure the pain than forgo TPN – his only source of nutrition.  It’s debatable how much nutrition Craig is actually receiving, but it must be enough to keep him going – psychologically if not physically.  He’s asked to increase his TPN to twice a week, but his blood work is such that, an increase of high-volume nutrition could actually hasten his death.  His heart, kidney, and other organs can handle only so much extra fluid.  His body is struggling to handle his weekly dose; another TPN could over-task an already stressed heart. 

As long as Craig can tolerate the discomfort, he’ll continue to receive TPN, and as always, we’ll continue to support him.   We’ve adjusted to his body’s reaction by anticipating blah Wednesdays in advance.  Whether anxiety or increased pain, we’re prepared to help Craig work through his discomfort.  -- J