Chapter 8- part 1-Walk With Me

The next few years blur in my mind. They run together with a sameness of routine but there were moments that I literally wipe out of my thoughts even to the point of not remembering the dates or even the year.
My older son’s illness was progressive and by the time he was in the first grade his teacher brought it to our attention. He wasn’t growing at a normal rate, his skin color was pale, his stomach was bloated, his energy level low and decreasing.

We immediately took him to the doctor and tests were run. He was severely anemic so they started giving him shots for iron. We took him back and forth to the doctor for a year and he grew weaker. Thank goodness my husband took matters into his own hands. One day, after a visit to the doctor and another shot for iron my husband got out of the car and went back into the doctor’s office. When he came out it was with an appointment for our older son to go to Mayo Clinic. I felt an overwhelming sense of relief and less than a week later we were on the road.

Josh stayed with my parents-in-law. I needed my energy and focus to be with his brother. Because we’d seen such deterioration in his condition I was frightened.

At that time each patient was assigned a doctor who coordinated all of the tests that needed to be run. Our local doctor was treating our son for a blood disease so the specialist in charge was a doctor in that field.

The first tests run were X-rays of my son’s abdomen. I remember voicing my fear and worry to my husband when the X-ray technician spoke up. “I’m not allowed to tell you anything about the x-rays,” he said. “But I know what this is and it’s fixable.” The weight that lifted off of me when I heard those words brings me to tears even now. I could handle anything as long as the problem was fixable.

My older son was diagnosed with Hirschsprung(sp?) disease. He needed immediate surgery that would be followed by two more surgeries at three month intervals. To make matter worse we were told that if we had been even one week later he might not have survived that first surgery.

The reason I bring up this situation on a blog about Joshua is because it brought about two major changes in how I perceive life and how I deal with life.

First, the local doctor was treating my older son’s symptoms. The doctor at Mayo clinic was very upset at how many iron shots my son received. The danger of him acquiring hepatitis was huge.

Second, the local doctor was going on the assumption that my son suffered from a blood problem. Hirschsprung disease is in the intestines and it should have been diagnosed at birth. At that time, I felt that Josh’s condition was an accident, pure and simple. I never blamed anything or anybody for his cerebral palsy.

I felt enormous anger at not diagnosing my older son’s condition. To watch him suffer, grow weaker; come so close to dying is an indescribable sorrow. That wasn’t a simple accident. That was laziness, apathy, pure and simply not caring on the part of the doctor who delivered him.

So the first major change in my thinking was never, ever to let a doctor treat symptoms. I want to know the root problem. I want that problem fixed. I don’t want to be prescribed a pill and get a pat on the head. We wasted an entire year doctoring symptoms and my son almost died.

If you have a problem and they don’t tell you what the cause is, then either find another doctor, or go to the best clinic you can get to. Don’t settle for, I don’t knows, or, these things happen, or, it must be this because it isn’t that. I don’t want hear an indefinite. I’ve had a lifetime of those. I want to know what the problem is and what I have to do to either fix it or make it better. I have become a bull dog when it comes to medical problems.

The second major change in my life happened while my older son went through his surgeries and recovery at St. Mary Hospital in Rochester, Minn.

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