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Update on my husband/Nurses and Some Doctors needed to be better educated about laryngectomees

Ladylacy
Posts: 462
Joined: Apr 2012

 

My husband had a needle biopsy yesterday, and yes his lung collapsed and he is now a patient. During all of this several of the nurses kept saying he had a trach. I told them repeatedly he has a stoma and that that is his airway now. That if he needed oxygen it can only be given thru the hole in his neck. Some knew, some didn't and that is scary. I told several of them that they needed to be trained regarding someone who had had a laryngectomy and of course, they looked at me like I was crazy because they knew but in reality they didn't. Several agreed with me though. I did feel comfortable enough to go home last night and will be heading back later this morning. 

 

I just kept making it a point that he is a neck breather and asked that it be noted on his chart in big letters. Also told them to note that if he rang for the nurse, he couldn't answer. And sure enough he rang, and they come on the intercom and say can we help you. Then the nurse wrote his phone number on the board for Joe to call if he needed anything after learning that he has no voicebox. Scary again. He has a Tru-Tone EL but for some reason he was having trouble yesterday using it. Think it was due to the fact that he was laying down and had oxygen around his neck. Some of the nurses thought he wasn't able to do anything for himself. I had to tell them he was very mobile just couldn't talk.

 

Now this is the hospital that his specialist uses so you would think they would be better trained regarding what a laryngectomy is. Also several of the nurses we spoke with are foreign and Joe was having a hard time understanding them. I could or would ask that they repeat themselves when I couldn't understand them. I have nothing against a foreign nurse or doctor, but just feel that they should be better able to communicate with us.

 

Another thing that is scary is that the radiologist said that the tumor or whatever it is, was very small (but she was able to get cells thank goodness) but had grown over the last 3 PET/CT scans and that they almost didn't do the biopsy and just wanted to watch it but for some reason the doctor was pushing the biopsy. Told me she tried her hardess to keep from collapsing the lung and that looking at the PET she couldn't understand why they didn't do the esophagus biopsy first. That was lite up she said. 

 

Sharon

 

Caregiver to husband/ 2010 laryngeal cancer/2011 cancer at the cervical of the esophagus

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Sharon,

 What a day you two had yesterday! If you find yourself in the same position today, most hospitals have a patient advocate position, check through any paperwork they might have given to you, or just ask in admissions. One would think that a hospital is ADA compliant.   I think the older I get, the more I notice a lack of critical thinking. It happens in all fields, just most are less noticeable And certainly not as important.

Your husband is lucky, that you are a critical thinker, and see it coming... It's not easy going through these kind of days, but you are doing great.. My best to you both.

and prayers for good results!

Kari

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

This kind of mental disengagement happens all the time with trache patients.  When I had my temporary trache, my wife sized up the lack of thought process in an hour or two and called for a meeting with the charge nurse.  Notes were put up in the nursing station and in the room that I couldn't talk because I had a trache.  That mostly put a stop to the call light snafu.  There is nothing quite as frustrating as putting on your call light when you cannot speak, and have the person on the other end say "can I help you?" a few times, then hang  up.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Oops!

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

I was a wreck everytime we had to put my mom into the hospital, because I knew what we were going to have to go thru before everybody got on the same (and correct) page.....she too was a laryngetomee.  It was the same scenerio each and every time....she also had COPD, so in a hospital setting the dry air also made it difficult for her to speak with her TEP, as the mucous would harden up so much....they were forever trying to put the mask on her nose, and asking questions thru the microphone by her bed....

We almost hung a sign over her head "NECK BREATHER".....but my sister decided to put it on the white board in her room....

Sorry about the lung collaspe....it's not comfortable, that's for sure (they collasped mine putting in my port)....and I'm sorry you have to be there for every shift change to make sure people know who your husband is, and what he needs.....

p

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sorry for the bad day.....even though I can't relate personally, it bothers me that nurses who are so well trained can't get on the same page or understand what is needed. 

I like what Pat's wife did...called a meeting with the charge nurse.

Best,

 

Tim

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