Tracheostomy Questions

[Wilson2009]

I had a tracheotomy performed on February 28 and am looking for input on living with my new best friend.

A little background first. My tracheotomy was done because my upper airway was severely compromised to the point that choking became a way of life again (ah, the joys of bulbar onset) and to facilitate clearing my secretions. This was an awake tracheotomy, meaning the opening was made under local anesthetic while I was still awake. Once they had secured the airway, they knocked me out. The good news was that I was on room air in recovery and have had no complications with the surgery. Joyce has been great at learning how to care for the trach, changing cannulas, completing daily maintenance, and suctioning. They placed a cuffless trach tube, which means I can still breathe through my nose and mouth if I block the cannula opening.

So on to the questions:
1. Has anyone else had a trach placed because of a compromised airway and inability to clear secretions? I would love to hear about your journey.

2. I get periods where I am constantly coughing mucus out of the trach. These periods last two to three hours and the mucus seems almost like a steady flow. Suctioning has no effect on this, neither reducing the rate of mucus being coughed up or the time the event lasts. I am hoping this is part of my body getting used to the trach tube and will eventually even out. Is it normal to have these periods?

3. I am having trouble trying to use my cough assist in conjunction with the trach. I think this is because the trach is cuffless. So I have reverted back to using the facemask and the pre-trach settings and blocking the cannula to close the loop. Any other suggestions, given that I am trying to pull secretions from my upper throat to a place they can be suctioned.

I am sure I will have follow-up questions later on.

 

[Nikki J]

I hope people with direct experience chime in. Certainly people have had trachs for this reason.

usually the secretion issue does calm down after a couple of months. I think often people who trach and quickly either decide it was a mistake or otherwise “ fail” are too weak / debilitated to get through this phase. I was glad it sounds like you are handling it as well as possible. Iamals had a recent event askmeanything which featured trached PALS. I can’t find a link to a recording but will keep looking

 

[Nikki J]

Here it is ( I haven’t watched) there is a part 2 tba and I will let you know if it is announced

 

[Wilson2009]

I appreciate the link. Interesting presentation.

Both my pulmonologist and ENT recommended doing this sooner rather than later because as one put it 'I still have a skill set to cope with the changes.'

 

[Jimi]

I've had my trach since September '21. I was on bipap 24/7 for about 3 years prior. It was finally too difficult to protect my airway so I got the trach and feeding tube at the same time. Mine is cuffed and I never deflate it.
For the first two months I was using the recommended humidifier settings and the inline suction catheter along with the cough assist.
After slowly changing things, this is what has improved things for me:
Humidifier provided way too much moisture for me. I now just use a HME. Much less congestion, but secretions are still thin enough. Never had a blocked canula.
Stay hydrated
Pay attention to the trach tie tension. Too tight irritates too loose moves too much
Removed the suction catheter completely... It's irritating to me and doesn't work as well as the cough assist.
I adjusted the cough assist to higher pressures and most importantly, we got the right technique. During exhale you need to crack the line. This draws out the secretions very effectively. Without cracking it you end up just pushing gunk in and out without really getting it all the way out. I attach the cough assist directly to the canula. My 13 yo daughter learned to do this in five minutes. My 75 yo mom took longer, but either way it's easier than the suction catheter.
Your case is different as you have no cuff. I wonder if you can use a cuff and just inflate it when needed for secretion control? With an inflated cuff and properly executed cough assist, it's amazing how well it clears things. Unfortunately in my experience so far, there's no getting away from the fact that there is a foreign object in my throat. During the day every 1-4 hours the cough assist is required. Fortunately I usually go for 8-9 hours during the night with no attention required.
Not sure how much of this will apply to you, but some things to think about. All the best,. Jim

 

[Wilson2009]

Jimi, thanks so much for the great info. I agree with the trach tie tension. There is a sweet spot where it is almost like it is not there. I am lucky enough not to need to use a suction catheter very often as I can cough out 95% of the secretions. Like you, I find the suction catheter annoying at best and less than effective most of the time, which is why I am targeting the cough assist. Unfortunately, you are the second person who pointed to the cuffless being a large obstacle to overcome.

Can I ask how much water you are taking in every day? I am putting 2 liters of free water through the feeding tube in addition to the 50 ml before and after each feed or medication, nor the fact that Jevity is mostly water.

 

[Jimi]

I'm 150lbs. 5'9". I can only move my head. My caloric and water intake requirements are low. Urine output is usually between .7 and 1 liter and water intake is 1.1 liters. Calories from formula in feeding tube is 1225. My weight is comfortable and stable. I wish I had enjoyed more junk food before I could no longer eat! I'm using Iso source which has a lot of water to.