25 January 2010 - by ~ 0 Comments

Our Trach Experience

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.