A Matter of Life and Breath
Four machines keep me alive: A ventilator, a cough assist, a suction machine, and a nebuliser. These machines, used in combination, enable me to keep my lungs clear of the deadly secretions that accumulate within. Unchecked, the secretions block the bronchioles and can become infected, causing pneumonia or, more immediately, it reduces the productive capacity of each lung, so less oxygen makes it into the bloodstream resulting in cognitive confusion and eventually in suffocation.
I use two Philips Respironics Trilogy Ventilators in day and night rotation, 24/7. Each ventilator provides both pressure-controlled and volume-controlled breaths into the lungs via my tracheotomy. The ventilators are set to give 18 breaths per minute, but I can override that briefly if I need to take a few deeper breaths. Each one has internal and external batteries that provide roughly 6 hours of power away from the mains. We also keep a reserve battery on charge.
The riskiest time of day is first thing in the morning when the secretions have had time to build up overnight and thicken up. So, the first machine, apart from the ventilator obviously, used each day is the nebuliser. I use an Econoneb Nebuliser that provides a continuous airflow when in operation. It connects to a plastic chamber that slots into the ventilator tubing near the tracheotomy. The chamber contains a phial of 0.9% saline solution. I usually let the neb run for at least half an hour before using the cough assist machine. When the secretions have sufficiently loosened the nebuliser is turned off, and the operator removes the ventilator tube from the tracheotomy and swaps it for the cough assist tube.
The cough assist machine is essentially a ventilator on steroids. It pushes air into the lungs, but at a higher volume and pressure than the ventilator, and then sucks the air out again. It is, in effect, doing the job of my diaphragm, the large muscle, positioned just below the lungs, that does the heavy lifting when it comes to breathing and especially coughing. My diaphragm is, sadly defunct. The machine I use is a Nippy Clearway, programmed to run a five cough cycle plus two recovery breaths. The secretions are ‘coughed’ up through the tracheotomy and into the cough assist mount. At the end of each cycle, there is a seven-second delay, while
the machine resets itself before you can repeat the cycle. Seven seconds doesn’t sound like a long time, but it feels like an eternity when your lungs are heavily congested, and the tracheotomy is full of sticky secretions. At which point machine number four comes into play.
The suction machine, in this instance a Laerdal Suction Unit, does what it says on the tin, it sucks. The person operating the assembly of devices removes the cough assist tubing and, using a yanker (a ten-inch rigid plastic tube that curves and narrows at one end) attached to the LSU’s flexible tubing, hoovers out the tracheotomy and cough assist mount. The cough assist mount is immediately reattached; ideally, this all happens during the seven-second reset period, so the cough assist is ready to go again.
Often suctioning with the yanker is insufficient to clear the lungs. In which case a catheter is attached and, while the cough assist is running, inserted down through the tracheotomy into the trachea, stopping just short of the carina, the point at which the trachea branches into two large bronchi leading to the separate lungs. The catheter sucks up secretions that haven’t been drawn out by the cough assist alone.
This whole cough assist/suction process is usually repeated several times over the next hour or so. It takes a high degree of skill and coordination on the part of the person conducting the routine. They need to be able to switch between machines quickly, swap yankers for a mouth and tracheotomy suction, avoid grazing the carina with the catheter and, above all, react decisively if the tracheotomy inner cannula blocks mid-cycle. Most of my carers have
trained in tracheostomy management, but not all of them have the skills needed to carry out what can be a very high-pressure procedure safely. Fortunately, I have a core group of top tier carers who can oversee their less experienced colleagues — most of the time. Problems arise when members of this core group leave, are off sick or are on holiday. And, oh look, Christmas is coming.