The temporary tracheostomy
Tracheostomy (tray-key-OS-tuh-me) is a hole that surgeons make through the front of the neck and into the windpipe (trachea). A tracheostomy tube is placed into the hole to keep it open for breathing. The term for the surgical procedure to create this opening is tracheotomy.
Where do I begin? Yes it’s a lifesaving device to enable one to breathe but apart from that it’s a real challenge. I call it a trache or trachie but I think the correct abbreviation is trach. Note: this is only used if swelling in the mouth and throat is likely to threaten your airway after surgery. It’s a temporary, short term device.
Explaining the tracheostomy
A curved tube goes from the opening in the neck into the trachea. There seems to be an outer and inner tube. I remember a tube being removed to be cleaned – full of white snot or mucous or as they call it, secretions. That made me realise why nurses go on and on about secretions and suctioning and the humidifier. If mucous blocks the tube too much you can’t breathe properly. It can get into the lungs (?)
There’s an inflatable “cuff” on the inside part of the trachea tube that prevents air from going up past the vocal chords and the mouth and nose. To deflate this cuff, the physio or SLT collapses a little balloon that hangs from the trach in your neck. This happens about a week after surgery when swelling has abated enough for the patient to breathe normally. After this deflation a speaking valve is attached to the trach allowing air to go up through the vocal chords. The patient can then talk.
I pride myself in being an informed patient but this time I didn’t know what they were talking about with cuffs and balloons. In fact I didn’t know until right now when I Googled it and saw diagrams.
I’ve had the procedure twice in 2009 and 2021. Both times I found it horrible but this time a little less so and at no time was I aware that I was breathing through my neck. The tracheostomy serves its purpose well.
Do patients need to be better informed? This time no one explained it because I’d had one before and Covid meant that patients weren’t present for the multi-disciplinary meetings when this is usually explained. Last time I had a colourful handout about it but did I take it in? Not at all. The trach was still a shock. I wonder if a little more explanation is needed once the patient is conscious post surgery.
Here are some reasons why the temporary trach is hard for many patients.
LACK OF SPEECH: First of all you can’t talk. No sound comes out of your mouth. So only sign language or handwriting enables you to communicate.
You could use text to speech on your phone but I couldn’t use my phone much at all in my doped state. The hospital did supply a chart of signs but no one I met seemed to use it. I thought it was good.
Doctors, nurses, even my support person forgot I couldn’t speak or watched me hand-write and then read out the words out while I was writing them! I was so doped I kept doubling up on letters and then crossing them out.
This time there were lots of thumbs up or thumbs down. Yes or no. Binary. Nothing in between.
There were little whiteboards but even they were problematic for me because the marker dust was a bit annoying. I would advise these though with a small marker.
When my trach was partly opened up and I could speak, I was amazed at how much more agency I had, how I could build some sort of bond with the nurses
SECRETIONS: Breathing through your neck means there’s no nose to moisten and humidify the air and the breathing passages don’t like it with lots of mucous secretions which have to be suctioned with a sort of metal wand. Not as unpleasant as last time but some people find it very difficult. For several patients I have talked to, the fear of not being able to breathe while the tube is being handled and adjusted is very distressing.
HEAT AND HUMIDIFIER : Everything that is done to keep the trach clean so secretions don’t affect your breathing adds to the heat in the hot hospital room with the overheated (in my case) patient. There’s the nebuliser and the humidifier, both of which make various sucking and gurgling and humming sounds. To me that is an added torment to the already troubled mind! Totally understand why they have to be used though.
TRANSITION TO SPEAKING VALVE: When they open up the airway a bit and attach a speaking valve there is an amazing sensation, not only the return of voice but of senses. There’s a whoosh and a zing and hey presto you can smell again too. It’s an interesting sensation which for me surpassed the removal of the last drain and the NG tube.
However it comes after a powerful suctioning by the physio. My blood pressure went up and they had to come back later after I had my meds. Some patients have told me that they have had problems with this procedure: coughing the tube out and panicking to breathe. I have no idea why my blood pressure went up as I had no breathing problems that I was aware of. Suffice to say, this can be a hard time as is any situation where your’re scared you won’t be able to breathe. You really have to experience the tracheostomy to understand how it feels.
Some more about the tracheostomy
UK cancer support site Macmillan has some good info. Here is some about the speaking valve.
The (valve) is commonly used to help patients speak more normally. This one-way valve attaches to the outside opening of the tracheostomy tube and allows air to pass into the (trache), but not out through it. The valve opens when the patient breathes in. When the patient breathes out, the valve closes and air flows around the tracheostomy tube, up through the vocal cords allowing sounds to be made. The patient breathes out through the mouth and nose instead of the tracheostomy.
Some patients may immediately adjust to breathing with the valve in place. Others may need to gradually increase the time the valve is worn. Breathing out with the valve (around the tracheostomy tube) is harder work than breathing out through the tracheostomy tube.
After the speaking valve, the next step is to have the trach capped so you have to breathe through your mouth and nose. I found this a wee bit hard this time but after 24 hours I graduated to removal of the trach. Always a relief but because I had radiotherapy last time the hole at skin level has taken a while to heal. It closed inside pretty quickly though.
If you need to have surgery and might need a trach, be prepared. It’s a bewildering experience if you are not. Learn some relaxation techniques and make sure staff know if you are scared about your breathing during procedures. It’s quite a miracle how normal the trach can feel in terms of breathing and in a week or so (for many patients) the trach will come out and all you will be left is is the small horizontal scar in your neck: a badge of honour.
It’s hard to find info on the patient experience of the temporary trach but below is a link to a study.