About To Blow A Gasket

I apologize in advance for the emotionally charged post that you are about to read.  I also want to preface my rant by saying that I have great respect for this facility, the programs, and staff here at this hospital (although it will not appear so when I begin venting). This post will most likely be much more "personal" than "factual"...

We still have not sorted out the med mess here.  Despite many discussions about dad's bowel routine (we call "treatment"), they are still getting it wrong.  A 'treatment' usually takes 2-3 hours and occurs every other day, and is hard on dad's hips/butt (due to the H.O.). Since dad hasn't eaten anything all week, mom does not want to do a 'treatment' until Saturday.  Why put him through that when there won't be any result?  It took almost 3 days to get his feeds sorted out!  We've discussed this with each new nurse and all other people working on dad's case the past few days since coming out of ICU. Last night they gave dad one of the meds he takes the day before 'treatment' day.   Mom caught this but was too late (and not that big of an issue).  She stressed at that point that there WOULD NOT be a 'treatment' done until Saturday.  Today just after we arrived, the nurse shows up with a suppository and was ready to begin a 'treatment'!!!  Insert choice four letter words here.  We don't understand why these communication issues are happening.  EVERY appointment over the past 2 months (urologist, radiologist, neurologist, E.N.T., etc) has started with sharing the med list/routine.  Every single person we've been in contact with here has heard my mom talk about this.  It's so hard having to watch my mom fight and go over people's heads to make sure my dad is getting the (individualized) care that he needs.  The common response is "that is our routine here" but dad is not "routine" in any sense of the word.  Anyone that knows our situation knows that anything and everything that can be unique and unusual occurs with my father.  We feel like we are always bitching and coming across as nasty or mean.  It's not enough to have to deal with the physical and medical issues, we also have to argue, rant and rave, and get loud for anyone to listen.  It's awful.  This is not who we are...but who we are forced to be to advocate for dad.

Dad had a horrible night and did not sleep.  The poor man is so exhausted it's not funny.  As soon as we arrived this morning and dad's security blanket (a.k.a mom) was here, he could relax and fall asleep.  For the past 3 hours he has slept the most (and deepest) since surgery.  The wonderful P.S.W. stayed longer than her 12 hour shift until we arrived because dad had such a hard night. He said that he wouldn't have made it through the night without her.  We are soooo grateful.

The respiratory therapist was here this morning and deflated the balloon in dad's trach.  This is one step closer to being able to talk again.  Mom is currently having a meeting with the charge nurse to go over dad's file and (hopefully) get everything sorted out.  We hate having to 'go over heads' but these mix ups need to stop and we need to stop repeating the same information over and over and over.

Stay tuned to see how our "drama" unfolds...