Just below the third vertabrae in the neck (C3) is the nerve that controls the diaphragm. Since my injury is at C2/3, I don't have the luxury of controling my breathing. Therefore, shortly after I was injured, a tracheostomy was placed and I was connected to a ventilator (vent) for breathing.
My parents were presented with two options for a vent before I left the hospital. They chose the PLV-100, made by Respironics, due to it functioning quieter than the other option. It was one of the first portable vents available, but it is very reliable and did its job, giving me air, very well.
In 1985, it was unheard of for a vent dependent patient to return to home and go about normal life, especially a three-year-old. Therefore, the company that serviced my vents, one for my wheelchair and another for bed, had only myself as a client for the first few years. The vent fit well behind my chair and would run on an external battery all day without having any problems.
Unfortunately, this model of vent is no longer in production and has been replaced by other options. However, it is still the most reliable, and least noisy, of any system I have seen. The size is much larger than modern vents, which does make wheelchair options more difficult, but it is worth the inconvenience, at least in my opinion, to have a reliable, quiet running machine.
Diaphragmatic Pacemaker System
In February 2008, I was part of a research panel by Synapse Biomedical about their Diaphragmatic Pacemaker System (DPS). It had recently been given FDA approval for persons with SCI and the company was looking to include more individuals as DPS users. The system works by having four wires implanted in the diaphragm, with a fifth grounding wire elsewhere, that then exit the body and connect to a control unit. It has a small patch on the side of the chest that the external equipment connects to. The control unit, or pacer, then gives an electrical pulse through the wires making the diaphragm contract and allowing for more natural breathing.
At first, I was very against the idea of having something implanted in my body, but the more I thought about it and talked with company, the more I became used to the idea. After working with my insurance company for over a year, I received my implant in November 2010. No facilities in Iowa did the procedure, so mine was done at Northwestern Memorial Hospital in Chicago. It was not a well known, or commonly used, device, so I was only the seventh successful implant at the hospital.
Breathing through my nose again for the first time in over 25 years was a different experience. My sense of smell was very sensitive and picked up any odor. It took a while to get my diaphragm used to working again, but I was going all day, about 16 hours, by late May 2011. Unfortunately, my insurance has said that I don't need as much nursing care when using the DPS, even though that is not the case. Therefore, that has kept me from using it 24 hours a day and I still use my vent at night when I sleep.
It is a great feeling to not have tubes during the day when pacing, using the DPS. It is also generally good to be able to use my smell during the day and further experience the world around me. Other then increased suctioning, see below, my biggest drawback is speech quality. On the vent, with a passy-muir valve, I could talk non-stop without having to wait for a breath. This system, due to using "normal" breathing, requires a stop every time I take a breath. For the most part, the change has been good, but anyone looking to switch to a DPS system must carefully examine their lifestyle and what impact it would have.
In order to keep my lungs clear, I use a suction machine to help bring out extra secretions. When I used the ventilator, I averaged needing suctioned about 2-3 times a week. After I started using the DPS, I went to needing it done 3-4 times per day. Using more of my lungs is good, but it causes mucus to increase at a faster rate, and breathing through my nose also increases allergic reactions to items such as grass and pollen.
Unlike what is commonly taught for new SCI, I always use sterile technique when suctioning. This has greatly reduced my lung infections or other related problems. Some people I know with an injury level like mine get pneumonia a few times per year. I have been fortunate to only have it three times in my life. Therefore, I strongly urge anyone with these needs reading this to use sterile instead of clean technique. Supplies may be more expensive, but it is worth it for your health in the long-run.