Ok, I believe I've finally had an experience that is "typical." My cancer treatment was atypical for several reasons, but mostly because one week in, I got the blood clot in my small intestine. This caused me to miss one chemo and have to double-up some days on radiation to make up for missed doses while I was down. So, not sure how much of what happened to me would necessarily translate into what would happen to someone else. Certainly, some things would be similar, but … I dunno.
However, post-decannulation (removal of the tracheostomy tube) seems to be progressing as normally as you could expect for such an abnormal condition.
Before the tube was removed, if I blocked the tube (which I was routinely doing in the weeks leading up to removal), breathing became more difficult. Not bad if I was sitting, driving, or doing nothing much. But, if I took the stairs or did much of anything that would increase my oxygen load, I had to unblock for a few minutes so that I could breath fast/deep enough to get enough air.
So, despite desperately wanting the damn thing out of my neck, it was with some trepidation I approached the removal itself. A team of doctors (this is a teaching hospital, so nearly every doctor's visit included a few doctors or doctors-in-training) came in at around 6:30AM. Removal was a complicated process that consisted of…releasing the Velcro holding the strap around my neck and pulling the tube out. They then quickly pressed a medicated dressing and then taped a gauze pad over the hole in my neck.
The first thing I noticed was that I was able to breath with absolute no restriction in my airway. My slight fear that without the tube in breathing would be laborious completely dissipated. Breathing was great.
Then, one of the doctors said "When you talk or cough, press your finger here" and proceed to poke me way to hard directly in the stoma. Ouch! The area was not especially tender, but, man, he pressed in a bit aggressively. Twice. I actually batted his hand away (sorry about that) and rasped "Dude!" (sorry about that, too). They all watched me breath for a minute, then booked it out of the room. I must have had a look on my face, or something.
Ok, so as I said breathing was great. Let me modify that. Breathing was great if I was breathing from my mouth. If I breathed through my nose, there was enough back pressure that a lot of air went in/out of the stoma. I really thought that the stoma should be sealed off better, so that afternoon, I had the nurse re-dress the hole. She used basically the same method as the doctors, but used a lot more tape to hold things down and somewhat seal things better.
I left the hospital the same day that the tube was removed. The only instructions I got were "Be sure to block the hole with your finger when you talk, cough, or laugh, until it heals…which will take a week or two." I also got a bunch of information on stopping smoking (I've never smoked) and similar irrelevant advice, as well as things to watch for that might require a trip to the ER. A bunch of pages of stuff, and I foolishly assumed that taking care of the stoma itself would be covered. The entirety of that part was:
- Keep trach site covered with occlusive dressing.
- Apply pressure to the dressing when speaking or coughing to avoid air escaping from the hole
So, I supplemented with Dr. Google. Found a credible source (MD Anderson). Fold a 4×4 gauze twice and tape over the stoma. Then, cover with a waterproof wound dressing. Change daily.
Ok, this worked much better. If I was lax in covering the hole in my neck when I talked (or if a cough snuck up on me), air would inflate the dressing a bit, then the air would go back into my neck to deflate. This was the case for about a week. Then, my neck became a one-way valve. When I coughed or talked without fully sealing my neck with my finger, the air would inflate the dressing. But, I'd have to press down on the dressing to "burp" the air out around the edge…the air would no longer go back into my neck. Around Day 10, my trachea was healed enough that no air came out at all. I replaced the gauze and wound dressing with a smaller (about 2 x 3) clear waterproof bandage and no gauze.
For my next adventure…my PEG (stomach feeding tube) comes out on Wednesday. It has been hanging unused from my stomach for over 6 weeks now. Meanwhile a crust has to be cleaned away every day from around the exit wound. So far, my only instructions are to be there at 9:30 AM Wednesday and to stop taking my baby aspirin until after the procedure. I might have a few more questions before I leave after this procedure, if the printed followup instructions are as skimpy as they were for the trach tube.