|California state map|
|The Golden Gate Bridge in the fog|
|Cable car in San Francisco|
When I think back about this trip now, I see that God was definitely preparing the way for us, and He was preparing our hearts as well. He gave us such a sense of peace about the whole thing. We should have been filled with dread and worry. Christopher still had the feeding tube precariously placed down his nose. We should have been worried about it coming out. What would we do if it were to come out? Would there be anybody there who could put it back in? Nobody knew us there or understood the rare nature of our situation. What if something were to go wrong? We had plenty to worry about, and yet we just new everything was going to be okay. That's grace!
The flight was uneventful. We landed, rented a car, and ate some lunch. Luckily, Mike had some cousins who lived in San Francisco, and they graciously invited us to stay with them. We contacted the doctor to get some last minute instructions. He said that we needed to stop Christopher's tube feedings until the test, and that we should arrive at the hospital the next morning.
Our appointment was very early. We met the doctor who would perform the tests at the hospital. He seemed like a very practical and friendly person. He explained the entire procedure to us in "layman's terms" and answered any questions we had.
Then he took Christopher to the x-ray department to install the test probes. When Christopher came back, I could hardly believe my eyes! I had thought that one tube down his nose was bad, and now he had six! Each tube was a test probe that would measure the contractions (movements) of the muscles in his digestive tract. Two were placed in his esophagus, two in his stomach, and two in small intestine.
Next Christopher was hooked up to a Manometry machine that recorded all the data. We began the test with no food in Christopher's GI tract. Mike and I were given a sheet of paper, so that we could record if Christopher moved his body or cried. We were supposed to write down what he did and the time it happened. This part of the test lasted for a couple of hours.
For the next part of the test, the doctor introduced "a meal" into his stomach using another tube. The Manometry machine recorded how his GI tract reacted to the introduction of a meal. Again, we wrote down anytime Christopher moved his body while making a notation of the time. More hours passed as the Manometry machine captured it all.
When the test was over the doctor took all the test probes out, put Christopher's feeding tube back in, and met with us to discuss the results. This was the moment we had been waiting for. We were finally going to find out what was wrong with our son.
The results were clear and definitive. The Manometry test proved that Christopher's stomach was COMPLETELY PARALYZED. His small intestines worked "okay," in the areas they could test. However, they could only get the test probes down into the first part of his small intestine. How well the rest of it worked was any one's guess (you have over 20 feet of small intestine). His esophagus was the only thing that seemed to be working normally. The doctor in California confirmed the diagnosis that our doctor in Oregon had suspected. Christopher had Chronic Pseudo Obstruction Syndrome.
Chronic means ongoing or of long duration. Pseudo means false, and an obstruction is a blockage. Basically, he had an ongoing false blockage. His GI tract wasn't actually blocked in any way, but it acted like it was. The real blockage was the failure of his GI tract to move food from one end of the tract to the other. I think it's kind of a silly name. They should just call it Chronic Motility (movement) Disorder.
You might think that there was a lot of crying and hand wringing after we heard the diagnosis, but there wasn't. Both of us were so relieved that we finally had an answer, a proven diagnosis. Now what? What happens next? Is there a cure? We would return to Oregon in search of the answers to these questions.
|Christopher has Chronic Pseudo Obstruction Syndrome. It is a motility (movement) disorder of the digestive tract.|
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