WHAT I LEARN THIS SUMMER:

"Fart through a Trache and Honk like a Goose"

In July, 1999 I had a Cat-Scan of my neck because of cervical pain. Like many persons with cerebral palsy, I am at risk of a cervical spinal cord injury. The pain went away so I never went back to the physiatrist until March the following year. When I saw the Doctor he got the report faxed to him. My neck was fine but it showed a growth on my thyroid. He asked, "By the way did you know you have a mass on your thyroid?" He called my primary doctor and informed him about the mass. The Monday after I saw Dr. Tolchin I called my primary doctors office to make an appointment with the nurse's practicer. I got the appointment the same day. So I went for tests and a biopsy. Because of the biopsy was not clear as to cancer or not surgery was recommended. Also I was getting short of breath two or three years earlier, but thought it was just because I was a "fat athetiod".

Before Surgery there was a pulmonary consult done. Because of the consult, the doctors felt it was safer to put a trache in to maintain an airway after surgery. Well the removal of the thyroid went fine. It was cancerous, but the doctors got it all. The Pulmonary Function Test showed that I have limited lung complicity. I disagreed, but nobody listen that the test wasn't designed for people with cerebral palsy. More about this later. But the tracheotomy was another matter. It was and still is a nightmare. (The details are gory) After surgery I was placed on a vent in CCU. The first night they had me sedated so I had no pain. The next morning the coughing started for 24 hours straight. I was tired and my sister helped me focus on my breathing when the coughing got to be non-stop. My sister stayed with me the entire 24 hours. I couldn't talk because of the trache. The doctors were afraid to give me any pain meds because I might stop breathing. Finally, my sister had enough so she very assertively and professionally insisted on valium for me and that my medication pump be filled with bacofen. (a muscle relaxant.) I was in and out of CCU the first two weeks. After the first 48 hours I was placed on a floor. Before I went into the hospital I made sure I had a sitter stay with me 24 hours a day, since I couldn't talk. On the floor I had troubles with the trache. I was coughing my head off. My day sitter was and still is great. The night person I got rit of after the third night because she never woke up when I needed her. Once I got enough strength to throw a pillow at her and vocalized some. Even that didn't wake her so I ended at the foot of the bed with the sheets off the bed. Then a doctor got the bright idea to take the trache out because I had sooooo much trouble with it. That was a mistake. I went into respiratory distress. I landed back in CCU with another trache. I spent less then a day there. I was on the floor again. Three days later they took me into surgery again to adjust the trache. I was sedated for 48 hours and had 2 operations to correct the trache. Then, on the floor I developed a bladder infection. Also, the staff forgot a minor detail, so I was impacted. That was no fun. They finally realized what was happening when I was vomiting across the bed hitting the nurses and the aides. They might had to perform another operation, but they put a catheter up my butt for 5 days. That did not feel good at all. Soon I begun to have nightmares. At first, they were a minor annoyance. But the time I got transfer to the rehab unit they really were bad. They stopped only after I didn't use the humidify air at night I was transfer to the rehab unit for 2 weeks. There my strength came back and I was walking with a walker short distances. My progress surprised everyone, including me. The ENT doctor took the trache out in Rehab gym, which nobody appreciated. After he took it out I went into a panic attack. But shortly afterward I realized everything was fine and I was breathing on my own. I came home the last Friday in July from Rehab. I had to call 911 at 5 AM Saturday. By 9:15 I was in surgery putting in another trach. tHE DIAGNOSIS is Subgluttle Stenisois or scar tissue in the trache. During the first fours days after the surgery I couldn't talk. So I said an affirmation to myself "I am breathing on my own for me." Later I added another affirmation "I am breathing peacefully for me." When the coughing got to me. In between I said a lot of Hail Marys', Our Fathers, and Glory Bes, It was scary because the doctors said I might be living with a trache for the rest of my life. I spent a week in the hospital and came home with a trache. I was not very happy. Monday I went to the University of Miami to get a second opinion. The appointment with Dr. Weed went very well. For a surgeon, he is very open and we toss some ideas around for removing the trach. He seems to think it is not subgluttle stenosis but my trach was collapsing from the swelling. He also LISTENED to my sister when she told him to give me valium before examine my throat. It was a lot easier to work with me. A course he will not know until he goes in. Also, we talked about pain control. We all agree to keep me sedated and on the vent for a few days after the surgery so the spasms would be as bad. And to give me valium and morphine after. That combination worked the last time. I am taking valium now to slow the coughing down. At times I cough so bad and so long I disassociate to the point that no one is taking care of the body. Which is a strange and scary feeling.

One rather humorous point he made: If I had limited lung compactly why then do I have such a strong cough. Because the pulmonary doctor didn't listen to me when I the function test was not accurate since the technician never work with a person with cp. DAAAAAAAAAAAA.

I know I am going to make it through this. I have a lot more to do in life. When I get better I have a teaching job at the University of Miami waiting for me. I was awarded the Points of Lights Award by Governor Bush for my advocacy work with the disabled. Quite frankly, there is too much I want to do in life. I love my reputation as a "pain in the ass." I get things done. I want to get my Ph.D. in Disability Studies at the University of Illinois at Chicago. After that, weither or not I will return to Miami is another story. But ever happens I will continue to teach which is my passion in life.

MARTY