Cheryl's experience is similar to what I went through as well. Sometimes when the trache plugs up, you feel like you can't breathe and are choking. It can be quite terrifying if the nurses don't come right away when you need them.

Some of the nurses seemed better trained and/or more sympathetic than others. A few were quite ignorant of the needs of someone with a trache who is choking and can't get oxygen into their lungs. Some are better than others at noticing some of the little things like bed positioning, keeping your body physically straight and supported with pillows, etc. This was more important the first couple of days when I could not speak, wasn't sure how much I could move with all the IV tubes, oxygen tube, nasal feeding tube, heart rate/oxygen monitor thingie attached to a finger or toe, trache, wrapped up wrist, wrapped up thigh, bandaged neck, etc. I was a bit uncomfortable at times and felt as though my ear was folded back on itself when it was not - there was some nerve damage when they opened my neck up for the dissection. It was quite disconcerting with so much junk connected to me, being quite weak physically (from just having undergone a rather extreme surgery), and being unaware of which tubes I can move without setting off the code blue alarm, and having 15 folks racing into your room from various floors of the hospital. blush

Also agree that the whiteboard and erasable sharpie is a good idea. Someone brought me one a few days too late after I was able to speak, but all I had when I really, really needed it, was a clipboard with some scrap paper and a dull pencil. I had brought a pen and pad of paper with me and used that initially, but one of the doctors stole my pen! I had an iPad and a neat little app that speaks what you type into it, but chose not to bring it with me for fear of theft - you will be quite groggy and unable to keep an eye on it, so unless the area is secure, I wouldn't risk it.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards