The Fun Never Ends

It was a stressful afternoon here in our world.  My poor father has been transferred so many times today for various tests that I'm sure he must feel like a sack of potatoes.  He has moved from the intensive care unit and is now in a semi-private room on the ward.  Prior to getting here though he went for radiation and then his CT scan.  Radiation was very hard on dad as he dealt with anxiety attacks.  It was really heartbreaking because his head had to be bolted down (with the mask) and that didn't go over well.  His neck is swollen and very sore from the surgery and the radiation today and he's getting frustrated not being able to communicate with everyone.  He's been really patient with our lip reading but I know he's getting tired of this. Although it's good that dad is no longer "critical" and requiring intensive care, he is not comfortable with this move and is in fact, more nervous than yesterday.  In I.C.U. he had 24 hour care/supervision.  Here on the ward he is lucky to see anybody as the nurse is assigned to many rooms.  They really aren't prepared here for him here - no meds, no food, no suction machine... but don't you worry, the red roots have come out and mom has gone into 'advocate mode' and things are beginning to change.  Her reputation has proceeded her as the nurse said she was warned!  The nurses in the I.C.U. explained to the new staff that mom is not just any relative and that they need to a) take her seriously and b) listen to what she has to say because she truly does know best what he needs.  Dad is already beginning to freak out about us leaving tonight because he can't call anyone and can't use a call bell.  We THINK (not sure yet but) he might have a P.S.W. sit with him throughout the night just in case he needs anything.  This would make us feel much better.  I can't imagine how helpless he feels.  We can't stress this enough to the nurses on this floor to get them to understand that he can't move, can't talk, can't call for help, or can't even scratch his itchy face (which is driving him nuts - because of meds and tape from tubes).  The trach is really bothering him this afternoon and he can't seem to get comfortable.  We are also very concerned about skin break downs.... when we left last night we told the nurse not to turn him if he was sleeping (to not wake him up because he also hasn't slept in days) but that he couldn't stay on his right side all night (which is already a problem with the H.O. that hasn't been treated).  The nurse didn't turn him AT ALL so he was on this hip from the time we left until we got back.  Again, a case where mom knows best and people need to listen.  This isn't a regular, able-bodied person we're dealing with and the usual, regular routines are not always in his best interests (which we've seen and dealt with MANY times).  My mother should have an honorary nurses degree as she has provided most of his care here (which is nothing new). 

The good news is that tomorrow we need to bring dad's wheelchair in and begin to get him up for a short periods.  I think this will do wonders for him.  He also has internet access so in a day or two when he's up to it, we can bring in his laptop and he can touch base with you all himself.