The Boy With No Throat - Part 4

My beautiful boy, my courageous eagle scout, daredevil, sportsman, kindest of souls, my Ian; why did God, or fate burden you with so much ?

The years have been hard for you, Ian, and yet fruitful. You have had to try harder and be more than the rest of us mortals because your body betrayed you and pain has been your constant companion since the day you were born. Now, that indomitable spirit is in danger once again.

Ian is sixteen now and although he's skinny and a little undersized because he can't eat much, his body, upon reaching puberty, grew. It was just a little spurt of growth but it was enough to stretch the eosophagus the surgeons had built for him from a piece of his windpipe. It has been pulled so taut that it has narrowed the tube, dangerously so. The opening where the tube connects to his stomach has now almost completely closed. Even liquids can only enter the stomach, a few drops at a time.

We could tell he was in distress, more and more each day. He almost never complains, he is so accustomed to it, but now, he was in acute, extreme pain and the food was piling up into a hard column that could not go in either direction. Ian cannot vomit. There are no muscles in his oesophagus as there are in a normal one to push the food down or push the food up again. He needed emegency assistance.

His specialist ordered x rays and ultra-sounds. We knew for a certainty that Ian would need more surgery to lengthen and open the tube somehow.We thought perhaps they could use a piece of his intestine. Imagine our shock when, after consulting with his colleagues, the surgeon told Ian's parents that he couldn't operate. There was nothing he could do for Ian. What would happen now?

The doctor had one suggestion. They could insert a rod with a small balloon on the end and inflate the balloon in the narrow places, in hopes it would open the tube enough to help. But, frankly he didn't seem too hopeful. Now, the family would have to consider the dreaded stomach tube and pump once more.

This apparatus begins with a hard plastic valve being inserted directly into the stomach from the outside. A piece of flexible tubing hangs down from it which is connected, at regular intervals during the day, to a pump containing liquid food with all the right nutrients and to which Ian must remain attached for prescribed periods of time, while it pumps the stuff directly into his stomach. It was an option Ian's parents had avoided for sixteen years to give him every chance at a normal life.

If it must happen, then it must and I know Ian will take it in his stride with the same courage that he has faced countless surgeries, constant bouts of pneumonia and more pain than any human should be expected to bear. There is a reason for Ian being on this earth. He is special and he has a special destiny

He is searching for it constantly. He has spent his life helping underprivileged and physically challenged children. He is passionate about global warming and saving the polar bears. As a scout he adopted an old park and helped to clean it up and make it beautiful. Just recently he told me he would like to become a pediatrician and help children like himself. He also told me he would like to be a rock star (well nobody's perfect). He can do that in his spare time.

He'll figure out why he's here. He'll follow his destiny and I know he will amaze us all.

(To be continued... someday)