Deb,

Good for you to speak up in more ways than one to take your mom to a new facility. We had to change care facilities for my great grandmother years ago.

It is amazing to me how some nurses are when treating patients that are not able to speak. I had some not so great experiences while being able to speak and in the hospital for high blood sugar or loosing too much weight. While in the hospital for high blood sugar I was in pain and hit the nurse call button only to be ignored for almost 45 minutes. Thankfully my mom had my pain meds on her and she gave me some. That is a hospital NO NO and they told her that she needed to take them home but she was also not going to let me go in pain any longer without someone helping. Thank God for those who have helped us along the way.

We all need to be better advocates for ourselves with our doctors. If we don't feel comfortable about something either we or someone in our family needs to speak up.

Harrowing stuff, Dr. Brook. Thanks for posting it.

But I have to step in and testify about my experience with the entire process, beginning with my diagnosis (which is to say, the first FNA done of my enlarged lymph node turned up negative for SCC - but I've read that this isn't necessarily uncommon) and notably including my stay St. John's Hospital in Santa Monica, CA, if only to balance out all this frightening - and certainly important - negative stuff.

I had complications after my neck dissection necessitating an emergency return to surgery for a tracheotomy, followed by 6 days in the ICU and another 5 or so in a regular room. I can't say enough about the staff: they were great. In fact during those frightening 6 days I can remember only one time when the nurse took a bit more time to get to me when I was pressing the call button... and she apologized profusely, telling me that she had been doing a procedure in the next room.

My primary doctor also just seemed to be around a lot, taking personal care of me. A great guy.

Of course not being a medical person I have no idea if corners were cut, things omitted; if I came close to the edge at any point due to errors or mistakes, etc.

But my experience as a patient, and my full recovery afterward, are I believe strong testimony to the quality of care I received. If only everyone could have an experience as positive!

David 2

I had surgery 1 year ago Sunday. I was able to speak but even then begging for help in a couple of situations I was ignored. I wrote a 3 page letter to about 12 different individuals. They called to be sure I wasn't going to sue and that ended that.
Then they literally almost killed me when they put me in to control the pain. I was so high on pain meds I couldn't advocate for myself. I love my husband but he isn't medically in tune at all. Ultimately I was in ICU for 11 days and intabated for 7 of those days. Had he not finally stepped forward to demand a specialist I would not be writing this.
Someone I know works in a lab at a sister hospital if you could hear the stories you would wonder how any of us get out alive.

There is some real scary stuff out there and a lot of people don't know about. I find it interesting as they would probably not like to be treated as they are treating other people. I think part of nursing or Dr. schooling is to actually be a patient where they are not known so they don't get special treatment. Might open some eyes.

After my flap surgery and being on a trach in the ICU with a G tube I had an unfortunate accident. One of the nurses came in and was probably giving me some meds or something through my tube. My best guess as I can't fully remember all of the events leading up to it. ;-) But when he was cleaning up he was doing it quickly and actually pulled my tube out! They spent almost the rest of the day trying to find another one to put back in. All this knowing that this is how I get my food, water and medicine. I swear I wasn't getting it. And then the one they put in was like the longest tube I had ever seen and became quite a pain. That was until it burst when we were trying to clean a clog. Then it was a trip to the hospital to get a new one.

I just have to say my most memerable experiance following 3 surgery's to remove parts of my tongue is, when I needed help they told me to push the nurse button. Then they would come back and say "can I help you?".... I CANT TALK!!!!!! didn't they get it?

I will be well armed with my iPad when I go into the hospital and pens and paper just in case! I used to be a nurse - And one of the reasons I stopped is because it's next to impossible to nurse in a hospital setting. I mean to truly your job responsibly and with compassion. I was so harried and so concerned that I might kill someone by accident (it's easy to miss something when

Sorry - posted by accident - it's easy to miss something when you have too many patients and not enough time.

Cheryl, I have 5 nurses in my family, had 2 cousins that were Drs and your life is for sure a rough one. I have a young friend, best buddy to my youngest son, that stops to see me once a week to check and make sure I am OK. Yep. the Medical life is a rough one.

I have read most of it, and I know your pain, which is very sad. I was almost done with nursing school when i was diagnosed. I had one clinical left and then i would have been able to test.
And man did it just tear me up inside to see these "trained" hospital personnel keep making these mistakes, and I would try to help them, cuz i knew they were always short staffed, and they would either blow me off and do it wrong anyways, or they would just walk away and leave me sitting there needing help.

One nurse even took my call light away because I kept telling her my trachea was burning cuz i had vomited, and doc said if i had vomited there was a protocol to follow, and she refused to do it. So i kept pushing my button and the 5th time of me pushing it, she came in and shut it off and said "there isn't anything I can do for you maam!" and hung my call button up on my curtain so it was out of my reach. And when shift change hit, my little notebook had 3 full pages for the poor next nurse to read, and I was in tears and having an anxiety attack and had vomited on myself 2 more times, but because previous nurse had took my call button away and i couldn't stand up cuz all the tubes, i had no choice.

It just breaks my heart to know that people have to go through stuff like that.

I know a lot of the things that were not being done, or done wrong for me was my poor nurses were always running short, and often had 4-6 patients in ICU.

But because I didn't advocate hard enough, I ended up with a staph infection in my neck incision, and cdiff when they put my peg tube in.

I am hoping i never have to go back, and if i do, i am going prepared.

Hope you never have to go through this again either and good luck with everything!!

bethers, I would have been P*ssed. I get being overwrought work wise but to be left without a way of calling the nurse is negligence.