About a year and a half ago--two Aprils ago, more or less--we were thinking about the stages that it takes to get free of the respiratory support that I’ve been dependent on. First, there was moving from intubation, paced in the emergency room right after the accident, to having a tracheostomy with a size 8 trach in place—that was a huge improvement, since you didn’t have tubes running in through your mouth that were not only tremendously uncomfortable but kept you from speaking. Brooke was on the ventilator then fulltime, but began the process of weaning from the ventilator while I was still in inpatient rehab at the University hospital. At that point, we thought it might take a much shorter time to be off the vent, but that process was still continuing when the diaphragmatic pacer was implanted last April, long after I’d come to South Davis. Over time, his trach has been downsized from an 8 to a 6 to a 4, the smallest non-pediatric size.
Now here we are, at yet another stage in this process. Brooke has been working on something called a speaking valve for over a year. At first, he could only tolerate it for a few minutes; now he can use it all the time, except when his cuff is up and he’s sleeping. Like everything else, it took quite a while to feel comfortable with the speaking valve—in fact, it felt like starting all over again, like all weaning from the vent, with similar physical and psychological challenges. Now, it’s almost second nature for him to use it. He speaks almost normally and without much extra effort at all.
The speaking value, however, has several disadvantages. Most important, it requires constant humidification, since you breathe in through the valve at the end of the trach and don’t get the advantage of your inhalation passing through the upper airways and thus being naturally humidified. If he’s on the speaking valve, he has to have humidification 24 hours a day, limiting his mobility considerably, and making the prospect of going home somewhat more difficult. While air-conditioned buildings like hospitals, we’re told, are humidified at about 60%, a house in this climate can be as low as 16% to 18% or so, depending of course on the weather.
The next stage, recently begun, is the capping of the trach: this involves just a little plastic cap like a bottle cap that goes over the end of the trach, closing the hole in the throat off completely. This is a crucial step in getting rid of the trach altogether, if that will be possible, which would eventually mean removal of the trach, buttoning of the hole, and finally taking out the button and having the wound heal up. We’re not there yet of course, and don’t know whether we’ll get there, but Brooke has started the process of capping the trach as a step in this direction.
When the cap was first put on, forcing him to breathe in through his nose and mouth and exhale that way as well, he was able to last a number of hours with the cap on. This was very promising. In the past few weeks, however, he’s run into snags: decreasing times, feelings of fear and extreme anxiety, loss of breath, and, a couple of weeks ago, an emergency in which he was found gray, barely breathing at all, barely conscious. There any explanation for this frightening event, but it did happen while he was on the cap. In the past few days, he has started to muster enough courage to go back on the cap, but the mystery still remains why he ran into these snags in the first place.
One respiratory therapist has suggested that there might be an obstruction in the throat, perhaps in the cuff that surrounds the trach, or perhaps a benign growth in the trachea itself associated with wound closure at the stoma—something that could be identified through a scope and easily removed, but that might be causing problems now. But another possibility is that the same psychological processes that have operated all along in every respiratory transition have been at work here too. We’re talking about fear and panic.
Fear and panic are usually thought of as negative psychological phenomena, sometimes as moral failings. But they are real, and they’re nowhere more real than in respiratory distress. We’ve been told this over and over again by the various respiratory therapists, and the really experienced ones have exquisite sensitivity to the reality of fear and panic, and seemingly inexhaustible patience in dealing with it. You can’t talk somebody out of it; you just have to wait until it dissipates on its own, though of course certain anti-anxiety medications help. You can’t pressure somebody, and you can’t force somebody; that just makes things worse. Brooke talks about how hard it is to get panic under control, especially when you’re hyperventilating or on the other hand not getting enough oxygen to your brain. We remember how difficult the beginning of vent-weaning was, and all its various stages, and how difficult the beginning of the speaking valve was; this is a familiar pattern by now. Fear, panic, slippage backwards, real distress.
The speech therapist offers some help: count one—two—three slowly as you inhale, before you exhale, even through that’s sometimes hard to do. And another of the respiratory therapists, when asked what the key to controlling respiratory anxiety is, says, time. Time is the key. Indeed, quietly, in the background, Brooke’s respiratory capabilities are increasing—at their now-familiar glacial pace, of course—and two days ago he produced his first sneeze. Not a huge noisy sneeze, more a kind of proto-sneeze, but just the same something involving the same sensory mechanisms as a sneeze and the same sort of response. So we’re celebrating yet another proto-milestone in respiratory progress.
Meanwhile, he’s using the cap again—a hour yesterday evening, thanks to the perfect understanding of a particularly technically and emotionally skilled respiratory therapist, who let Brooke make all the leads while nevertheless facilitating them--and another couple of hours this morning with a particularly trusted friend. Will a scope be necessary? We don’t know, but progress with the cap is again certainly being made.