Well, got out of
prison the hospital Monday afternoon and settled back at the house. Came home to a vacuum pump and a fancy humidifier set up in the living room, ready for me to use. The pump gets a pretty good workout. I'm still generating quite a bit of mucus. If I use the humidifier (which pipes moist air directly to my neck) coughing gets pretty ridiculous. It is supposed to keep the mucus thin and easier to clear, and also moisturize the air going into my lungs…a function normally handled my my mouth and nose. But, the coughing makes it totally not worth it to use. That said, I found that if I block the stoma and inhale "normally" I can usually get enough air from my mouth and/or nose and don't cough at all.
I'm going to review the instructions for the humidifier to see if I can reduce the amount of mist that it is putting out…I think it is just putting out too much moisture. There are times when my throat is too tight to do the stoma-block trick when the humidified air would probably be good to have.
Have been tolerating the stoma pretty well, but I woke up at 3AM rapidly breathing. I wasn't really panicked. But, I could not get my respiration rate under control. I was getting plenty of oxygen, but just kept on panting. So, at about 5AM I decided that I should be checked out…concerned that it could be a respiratory issue, tachycardia, or dehydration. Drove to the UTSW emergency room, and they X-rayed my lungs…which were clear. Around 7AM my breathing slowed down all on its own. In fact, as I dozed, the alarm on the monitor sounded a few times for low respiration rate.
No idea what caused it. Emergency room staff at a loss, as well. But, as I was not in actual distress they kicked me out around 7:30AM. They were going to let my ENT team know about the visit, so that they could help to make any adjustments that they might know about to help. Made it back to the house in time to take a nice, long morning nap (well, really replacing sleep I missed with my little adventure).
I believe that my sense of taste is coming back…it might even be back. I've not eaten anything, so can't be complete sure. But, I get a really bad burnt hair taste in my mouth sometimes when I cough that I think is probably the high-protein liquid that I've been taking in through my PEG. I can't really swallow effectively…even trying to swallow saliva causes much of it to just go into my trachea, triggering coughs. So, I've been having to frequently clear my mouth using the vacuum pump.
I've been trying to do some of the swallow muscle exercises given to me by the speech therapist, but the stoma makes all that very difficult. Normally, the trachea moves up when you swallow to block the path from your mouth into your airway. With the stoma in, there is a lot more "stuff" to move during a swallow, plus the entire area feels a lot tighter than normal. I'll just keep trying the exercises until my speech/swallow therapy appointment next week. Maybe there are other exercises or tricks I can use to improve swallow function.
I had a dream a couple of nights ago that I ate not one but two Ultimate Cheeseburgers from Jack-in-the-Box. And, I had a third in reserve. Not sure why that was the menu choice, but I took it as a sign that I'm really, really ready to start eating. Not that I particularly needed a sign to tell me that.