Let's get out of Dodge

Hello All—

Not much new news to report except that I think we are getting more and more firm on our Dec. 28th leaving date.  Also, Kari manual wheelchair, which we need if her power one breaks and when we need to get into tighter spaces, has been denied by our insurance.  It is being resubmitted, but if it is not approved we will have to pay $3500 for it.  Because of the generosity of everybody who has sent donations, we have the means to buy it, but every dollar is important as there are so many costs still to come from home health care to prescriptions, to medical supplies.  

We went to Colorado Mills today, which was a good outing, but right now I cannot get over the incidences that took place here at the hospital the last two days.  Yesterday morning, without anybody telling me first, five administrators from the hospital pulled me out of the room to talk to me about the roll-away bed that a nurse had brought in for me so that I could sleep next to Kari.  Even though it was obvious to any logical human being that there was not a problem having the bed there, they told me that they had to remove the bed because it was a safety hazard.  Their official policy states that the area where Kari sleeps can only have one bed, so obviously they were allowed to remove it if they wanted to.  My primary disagreement with them is that the reason for the rule was not applicable in this situation.  There was plenty of space to move the bed aside if there was an emergency.  There was more space in the room with the bed there than there was in previous rooms that they had deemed safe enough for Kari.  Still, while I could not make them change their policy for me, the arrogance of the administration, none of whom had ever been in the room, and none of whom knew anything about Kari or her situation, deeply offended me.  If they had simply been honest with me and said that they were removing the bed because that’s their policy and they won’t make any exceptions, that’s fine, but they were trying to tell me that they had Kari’s safety and best interest in mind, and that staff had complained about the bed being there, even though not a word was ever said to me.  Keep in mind, none of the people in the meeting had ever been in the room or knew Kari.  They were so arrogant to even ask me “Don’t you want what’s best for your wife?”  

Today, the nursing supervisor removed a “do not disturb sign” that we had placed on the door.  When I confronted her as to why it was removed, she told me that she would not discuss it with me.  I had to yell to get her to listen so she immediately called security.  Of course it was unnecessary and I got her to sit down and talk with me, but got the same old run around that we always get at this hospital.  Apparently the nurse that took the sign off our door told her that she had spoken to us.  She did not.  When I told the supervisor this, she refused to believe me.  Because I had been so visible angry and raised my voice in the hallway, she told me that I was negatively impacting Kari’s care.  When I told her that people here that we have gotten to know and have actually worked with had a good relationship with us, she told me that it was only because they were too nice to tell me otherwise.  If they were honest, she said, I would find that they did not like me and were intimidated by me.  

The real issue is that Dianne, the supervisor, is intimidated because I can see through the smoke and mirrors.  I do not and will not accept the demeaning, dishonest and arrogant attitude that some of the nursing staff and the administration here display.  Some of the nurses here talk to Kari like she is three years old.  They are dishonest.  They assume that they know best even when they don’t know the patient.  And don’t forget about the incident that happened when I was gone and Kari’s nurse, against policy, denied Kari’s request to go back to bed.  The nurse sat in a meeting with us and Dianne and flat out lied about what had happened.  Dianne backed her up without hesitation.  “Let’s not worry about the details of what actually happened, lets try to move forward,” she said.  Never mind the fact that part of moving on is trying to understand what happened.  This may not seem like a big deal, but the day in and day out grind of being at a hospital for 145 days wears on you.  I think that the supervisors and administration here have forgotten what they do.  They have forgotten the Hell that every patient here and their families have been through.  They would fight for their loved ones too, I hope, but they do not want me to do the same.  

We are at the point now that we have zero faith or confidence in the nursing care at this hospital.  Not because all the nurses here are bad, to be sure, there are some amazing people here.  But what happens when something doesn’t go right?—Who is there for us to turn to?  We are seriously considering not coming back here for Kari’s re-evaluation.  My stomach turns with the thought of ever even having to think about Craig Hospital again.  The part that I am most angry about is that our last month here, our most important month in many ways, has to be so miserable.  There is too much stuff to do without having to deal with this.  I hope that I can let go of the anger that I have towards this place so we can get done everything that we need to get done so we can go home.  The last thing I want to do is to offend or have ill feelings towards the many people here that we like:  Dr. Balazy, Dr. Sam, Avery, Lisa, Debie and Debbie, Brea, Jamie, Laura, Laura, Heather, Heather, Heather, Amanda, Dianne and Dianne.  (Lots of repeater names in there, huh?)  I feel bad about hating this place so much when there are so many good people here.  The problem is when the people that are put in a position to deal with the problems don’t do their job.  We don’t expect everything to be perfect, we just expect to be listened to.  

I know that there is a lot of anger behind what I am writing here.  I hope that we can get over that and move on.  I guess I am using this forum to let it out because I feel that there is nobody else that will listen.  The psychologist and our case manager have been great about being our advocates, but there is only so much they can do.  There is a culture of arrogance here.  What I have come to find out is that a lot of the people that work here care about what happens here.  The people that run the place, and yes, I have spoken with the president of the hospital, are much more concerned with the image that Craig Hospital has to the public.  Maybe I was naive to believe that this place would be different.  People have told me what other places are like.  For all its reputation as a great institution, though, the administration’s mantra is “Image is everything, the patient is nothing.”