During the spring of 2001, I went through a period of losing strength. I used to take my wheelchair all over town, loved to go for Sunday strolls and drove my chair 4 miles to and from school. I live about 6 blocks from our local Wal-Mart and the city had redone the sidewalk. One Saturday I heard it was finished so I went to check it out. Well coming back, I got to this drive that leaned to the left, so my hand would lean that way too and I kept going down the drive. I finally got back to the sidewalk and got to the next drive (went into Taco Tico). I wanted to go down but I hit a bump causing me to fall forward and to the left. This forced my right elbow up against the control, pushing the control forward, and I couldn't get back up. I couldn't stop until the chair got level, and it stopped a foot away from a parked car. I sat there hunched over, in front of 8 cars parked at Sonic, with people in them. I yelled for help, none of them came. Then someone came out to the dumpster and yelled. Then, a truck turned onto the road next to Taco Tico. I locked eyes with the driver and yelled help. The gal at the dumpster turned, saw me and heard me and was coming, then the truck pulled up by me. They sat me up and called my dad to help me get home.

I was weakened greatly after being hunched over on my left lung. I had trouble sleeping at night; I would wake up gasping for a breath. These were signs of Sleep Apnea, so we scheduled a sleep study at Arkansas Children's Hospital.

On June 25, 2001 I had my sleep study. I figured it would just be overnight. It was far from it. In the morning I was told I had sleep apnea and needed to have a bi-pap for nighttime. I had to stay in the hospital to learn how to use it. They did blood gasses and found out my CO2 (carbon dioxide) level was dangerously high. We had no idea it was like that and didn't think anything was wrong, because my O2 level was normal. They told me that if I had waited another month I would have died.

They also did a swallow study to see if I aspirated. They discovered that I did aspirate and said I needed a gjtube. That meant, at the time, I could not eat from my mouth again. Needless to say I had to get a ng-tube until I could get the gj-tube in. This is where the troubles started.

I went in to get the gj-tube placed. While it was healing I had to have two ng-tubes in through my nose. Well we could not get a good seal with the mask, so air kept leaking out and we tried every kind of mask there was. My CO2 went up so they put me on the bi-pap 24 hours a day. They were also giving me morphine to keep me comfortable. Both, the leaking mask and the morphine compromised my breathing. The leak had my CO2 up there (96) and the morphine weakened my lungs. I started to slip into a comma. They flushed me with narcon and brought me back. They then suggested getting a trache, took me a day to choose to risk surgery or die. I chose the route that gave me the best chance of life.

About 12 days after that my stomach was healing. We had to do extensive coughing exercises. Well no one was thinking about what that stress was doing to the healing of my stomach. My stomach ripped internally and I passed out and woke up 3 days later with a zipper (stitches) down my belly, a new tube in my belly, and trache.

I had undergone emergency surgery, which landed me in ICU for several days. For the first two days afterwards I was intubated with a large tube down my throat. Then they took me back to surgery and put in the trache. The day of the tracheostomy my blood pressure went below the 50s and I received three units of blood, a rush of egg-white-like stuff and a push of IV fluids to get me stabilized. While I was still in ICU my Grandmother died and obviously I was unable to say good-bye to her properly.

Then while recovering I developed pancreatitis. It was about here where I lost my will to live. Even fighters have their limits. Got put on an antidepressant. About that time Mattie was on CNN recovering and he reminded me of my love of life. It was that and watching "My Left Foot" got me back in the game. 75 days in the hospital.

Basically, non-invasive ventilation is a method of providing breathing assistance to people with Duchenne Muscular Dystrophy (DMD), and others with diminished respiratory capacity, without the use of a tracheostomy.

The common method for dealing with lowered respiration in DMD is to place the person on a ventilator by putting a hole in one's throat and attaching a ventilator to it.  Noninvasive treatment doesn't involve the use of surgery to provide breathing assistance; it relies on the use of masks and mouthpieces to deliver air.

There are three main puzzle pieces necessary in non-invasive ventilation.  The first piece, is keeping track of oxygen levels (through use of an pulse oximeter) and respiratory muscle function or lung capacity (usually checked with a spirometer).  The second piece, is simply assisted ventilation through the nose (mask) or mouth (mouthpiece or lip-seal).  Finally, the puzzle is completed with assisted coughing, using a coughilator (in/ex-sufflator or CoughAssist).

Usually, people with DMD begin developing breathing problems while they sleep.  The most notable signs are headaches, tiredness, and inability to concentrate.  Some doctors believe tracheostomies should be administered at this time, however many doctors are now using ventilators (or more commonly Bipap) with masks made to fit over the nose or up slightly into the nostrils to help with breathing during the night.  This is often all that is needed for several years, until further breathing difficulties occur.

Between the ages of about 18 and 25 people with DMD often begin to have shortness of breath or other difficulties breathing.  At this point it becomes necessary to go a step further, to begin using a ventilator with a mouthpiece periodically during the day.  The best way to make this possible is by mounting a ventilator on their wheelchair as well as a mouthpiece that can be easily reached.  This way the person can breathe on their own when they wish and have assistance, also when they need it.

The other problems people with DMD have, when they have a cold, are underventilation (usually because of weakened lung muscles) and inability to have a productive cough.  To prevent both one must actively check their oxygen level with an oximeter to make sure they're getting the appropriate amount oxygen, if this is to low they need additional ventilation during the day.  When coughing becomes difficult the use of assisted coughing becomes almost essential.  This will clear the lungs making it easier to breathe.

My name is Patricia Schmidt and my son Bob Sutter, was diagnosed with DMD when he was 3 1/2 yrs. old. He’s now 21. I believe it is a miracle that he is still alive.

When Bob was 15 1/2 years old he came down with pneumonia. The pulmonary doctor told me that I would have to make a decision: whether or not to trach Bob when the time came. Luckily, it wasn’t that time.

During the next year I did a lot of thinking and soul searching. What if I made the wrong decision? How would I know? What should I do? With the help of family and a psychologist, I was able to make a decision.

For me, and for Bob especially, I believe I made the right decision. I learned that there are no wrong decisions. Whatever you can live with is the right decision for you. What may be the right decision for me, may not be the right decision for someone else.

The following year, March 1995, Bob again contracted pneumonia. This time it was pretty bad. After 3 days in the hospital, he went from having pneumonia in the lower left lung to having it in both lungs, upper and lower.

He had a bronchoscopy, which is a procedure where the doctor uses a scope and suction machine to go deep into your lungs to see where the pneumonia is and get it out. Bob was like a new kid after this procedure. However, it was short lived.

Four hours later, at 2 a.m.. I received a call from the hospital. They said that Bob had stopped breathing and his heart had stopped. They were able to revive him, but he was intubated and in the ICU. I knew right then and there that I wanted Bob to live at any cost; even if it meant he’d have a trach and be on a ventilator.

The doctors tried to talk me out of it, but I told them that it was my decision. Fortunately, Bob was able to be weaned off the ventilator after one week. The doctors were amazed and so was everyone else.

Over the next 2 years Bob’s health deteriorated. His lung capacity had gone down to 12%. In May 1997, Bob was having great difficulty breathing. He had frequent headaches, was always tired and had a lot of nightmares. One night I had given Bob a breathing treatment, which always helped in the past. This time, even on 5 LPM of oxygen, I couldn’t keep his O2 sats above the mid-80s and his heart rate was 160+ for over 4 hours. I knew he wouldn’t survive the night.

My husband, Rolf, and I took Bob to Dartmouth-Hitchcock Medical Center Emergency Room. They admitted Bob to the Pediatric ICU that night. His carbon dioxide levels were over 100 (normal CO2 levels are around 30-40). The doctors hooked Bob up to a ventilator using a face mask. This brought his CO2 levels almost in the normal range, but the face mask was very uncomfortable. Bob’s skin broke down, he sweat a lot on his face and he couldn’t talk with the mask on. I knew this was not an ideal situation.

I told the doctors then that I wanted Bob to have a tracheostomy, but I wanted to wait three days so that my daughters could be with us. Jenn drove up from New Jersey that day and Heather and her 2 sons drove from Texas, arriving two days later.

The next morning Bob went into surgery and had the tracheostomy. He came through the surgery pretty well. But when I saw all the work and care that was involved with the trach and ventilator, I started wondering if I’d made the right decision. Bob stayed in the hospital Pediatric ICU for 5 1/2 weeks. Bob was a trooper through it all. He loved all the attention he was getting. It was very difficult to believe that he almost died.

The doctors tried weaning Bob off the ventilator during the day. We started out with 2 minutes and increased it to 30 minutes over a period of time. However, Bob got very anxious and upset being off the ventilator. After 2 weeks of trying this, we decided that it wasn’t worth all the hassle and anxiety. We just let Bob be on the ventilator around the clock. Looking back, it’s much easier now that he’s on it 24 hours a day.

The doctors, nurses and respiratory therapists were all wonderful. They would not let Bob come home until Rolf and I felt comfortable taking care of Bob. We were trained how to suction him, how to clean the trach and stoma, how to use the ventilator, etc. We were also trained in CPR.

Both Rolf and I had to change Bob’s trach while still in the hospital. It was the most horrifying experience of my life. I thought how can I deal with this at home? I was really scared, but Bob was so good. He told me he knew I didn’t mean to hurt him. The first few times you change the trach it hurts because it’s an open wound. Now it’s just uncomfortable for him. But somehow I got through it all.

I had 24 hour nursing care for the first 2 1/2 weeks after Bob was discharged from the hospital. Then the insurance cut it back by 2 hours a day each week until they reached 10 hours a day, which is what I still have almost 3 years later. I changed Bob’s trach every week for the first 2 years. I figured the nurses did so much other stuff with Bob that I’d do that. I didn’t mind it after awhile. Now one of his nurses changes his trach every two weeks and I’m there as backup.

I just figured that Bob would be home in bed for the rest of his life, however long that might be. He’d just go out for doctor appointments. Boy, was I ever wrong! That couldn’t have been further from the truth.

Bob started going out a little at a time the first year. Then he went back to school to take one course three days a week. He took cooking lessons and then computer classes. He really enjoyed it. The school gave us a hard time since Bob was the first kid with a trach and ventilator at school. They didn’t want him there, but we persisted and Bob was able to go for another two years before he turned 21, last July.

Last summer he met Vice President Al Gore and Governor Jeanne Shaheen of NH.  He has his own website and has heard from people all over the world. All of our family and friends are truly amazed at all the things that Bob has done. We’re all very proud of him.

This September Bob will be giving Jenn away when she gets married. We’re all excited about this, especially Bob. This will be our first trip with Bob since he got the trach. We have to drive to New Jersey, about a 5 hour drive. One of his nurses, Dee, will be going with us and it should be a great experience.

EDITOR'S NOTE: You may contact Bob and Patricia by emailing: bob21@nhvt.net. You may also visit Bob's Website. We thank Patricia and Bob for sharing their story with us.

Both inspiratory and, indirectly, expiratory muscle function can be assisted by "air stacking", technically known as "glossopharyngeal breathing" (GPB). For individuals with weak inspiratory muscles and no ability to breathe on their own, GPB can provide normal lung ventilation and perfect safety throughout the day without using a ventilator or in the event of sudden ventilator failure day or night.

The technique involves the use of the glottis (throat) to add to an inspiratory effort by projecting (gulping) boluses of air into the lungs. The glottis closes with each "gulp". One breath usually consists of 6 to 9 gulps of 40 to 200 ml each. During the training period the efficiency of GPB can be monitored by spirometrically measuring the milliliters of air per gulp, gulps per breath, and breaths per minute. A training manual and numerous videos are available.

GPB is rarely useful in the presence of an indwelling tracheostomy tube. It cannot be used when the tube is uncapped as it is during tracheostomy IPPV, and even when capped, the gulped air tends to leak around the outer walls of the tube and out the stoma as airway volumes and pressures increase during the GPB air stacking process. The safety and versatility afforded by GPB are key reasons to eliminate tracheostomy in favor of noninvasive aids.

EDITOR'S NOTE: Used with permision from DoctorBach.com.