Will it Float? - the Ventilator Boat

by Eric S. Obermann
Huntsville, Alabama

I was only eighteen when the first symptoms appeared. I first noticed that my tongue was getting harder to move. The second thing I detected was air leaking from my nose while playing my clarinet. Before I knew it, I was off at college and having a great time. Then it happened for the first time: I vomited and aspirated. I did not know it then, but I had just given myself my first case of pneumonia.

I was barely able to drive home the four hours from college with this pneumonia. Two weeks later, we drove to St. Louis to see a neuromuscular specialist. I was not feeling well that day and by the time I saw the doctor I was in respiratory distress, and was admitted directly to the NICU where I was intubated, and had my first vent experience. Even though I now had a trache with a cuff, I continued to get recurring bouts of pneumonia. I then decided to have a laryngectomy, in order to prevent any possibility of aspiration. I remember that after this procedure the hospital nurse told me that I could never take another shower ever again.

When I first heard that I got very depressed. But fortunately for me I have very determined parents who figured out how I can shower with my vent by wrapping a hair stylist water resistant apron around my neck. This summer we went on a family vacation to NC, where we had a private pool. I decided that I wanted to take a dip. So I had my uncles lower me into the pool in my shower chair while keeping my neckline above the water. When I first hit the water I became alive! It is an amazing feeling to be immersed in water when you haven't been for over two years. One of the big benefits of being in the water with less effect of gravity is that I can move my limbs, which I normally can’t. It also feels great on my sore back after days in a wheelchair.

I am now a quadriplegic at age twenty-three and the specialists feel I have a progressive ALS-like motor neuron disease but are still hesitant to call it Lou Gehrig’s. I have been using a Pulmonetics LTV 900 ventilator 24 hours/day for just over one year. Prior to this I had nighttime ventilation for one year and even went on an Alaskan cruise. I was able to accomplish that with support from my pulmonologist, Dr. Goodenberger at Washington University in St. Louis who suggested this vent for traveling. The vents laptop-like size and light weight give it the portability for travel and allows me to dream of activities like aquatic therapy.

As I sit in a wheelchair my Physical Therapist lowers me into the water via a swimming pool ramp. She supports my neck above the water and uses two ‘noodle’ floats behind my neck to keep it dry and I float from the chair. I inflate the trache cuff a few extra cc prior to the swim. Originally we set the ventilator next to the pool but now use a plastic 9-gallon container to hold the ventilator and battery. This floats beside me while someone supports the tubing and assures that the “vent boat” floats. I can then swim and move about the entire pool and even do weight bearing walking, where as in the gravity world I can’t even budge. Swimming with my ventilator boat -I look forward to it every week.