It has been quite a while since I have posted......and, as you all know, I usually post about foods,
family and friends!
However, this post will be different.
Recently my brother, who is 62 years of age with Downs Syndrome, went into kidney failure.
I was at Mass on St. Patrick's Day morning when a text was sent by his staff. I did not receive the text until twenty minutes later. I went directly to the hospital emergency room where my brother
and the staff were in a private room.
My brother's bladder was no longer working, thus backing up and killing his kidneys.
He was admitted to the hospital and the next morning when my Mother and I went to the hospital,
a doctor explained that the kidneys were dying on Sunday and but had rallied 'round and were now
functioning.....since they had put in a catheter. He then explained to us that the question now was if
the bladder would be able to work after holding 2,000 ml.
The next day a hospitalist told me that my brother was being sent to the rehab, the catheter would
be removed and all the doctors would follow him.
The third day I spoke with the doctor from the rehab and asked what caused this problem and what
could we do to prevent this from happening again.
He told me he would put in for a Urology consult.
Three days later I asked the charge nurse at the rehab hospital what about the urology consult. She
explained to me that they had never responded. She told me she would put another call in to them.
That was a Saturday and that evening at 7:00 p.m. this lovely woman called me at my home to let
me know that she had placed not one, but two calls to the Urologist for a consult.
The following day, Sunday, I was standing at the Nurses' station when this lovely woman said she
had called earlier in the day but would call one more time......at this point the phone rang and there
was a urologist at the other end of the phone line. She explained to him that they had been attempting to connect with him for a consult since Wednesday, the 20th to which he replied that his was the first
consult received by them and they would be over sometime later in the day.
The following morning the catheter was removed and a "trial" begun.....this was deemed not successful so the catheter was re-inserted and in another week my brother was sent home to his
mother's house. I had also called the urologists' office and, after providing the proper medical POA,
it took one week for the doctor to return my call - which, of course ! I missed and when I returned his
call, it went to the main line of the hospital (not the phone he called from) and his office had closed
for the day!!!
I am going through all of this to describe the frustrations felt by the family.
We did not know why this perfectly healthy man landed in the hospital with kidney failure.
Each day there was a different hospitalist.
Once ensconced in the rehab hospital, he appeared to be in LaLa Land......what doctor was treating
The length of time it took for the doctor to return my call (seeking information) was absurdly ridiculous.
The nursing staff was phenomenal! Such caring, attentive individuals!
(Note to all: Nurses can only do what doctors tell them to do)
My bottom line is this: I had always heard that you have to have an advocate when you are in
the hospital or doctoring. I was there! I was at the hospital each day! I was on the phone attempting to contact the doctors! I talked to the wonderful nurses til I was hoarse!
End result? My brother was sent home with a catheter and the diagnosis of "don't know" what
caused the bladder to cease working and therefore resulting in kidney failure.
So, while I attempted to be the "advocate" I think I failed miserably. Was there discrimination
because my brother has Downs Syndrome? Don't know.....hate to think so.
In my day you went to the hospital for a problem, they figured out what the problem was and
prescribed a treatment or course of action to solve the problem and you were sent home.
Oh, for the good old days!
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