Friday, June 05, 2009

The Boy With no Throat 3

A waiting room in a hospital is a Purgatory on Earth, especially when a loved one is having high risk surgery. Time creeps by inexorably slowly. The stress is almost unbearable when it's a small child.
My son, his wife,Brian and I waited and waited. Ian was having his jury rigged oesophagus attached to his sternum, to keep it firmly in place, and an assessment made, as to how the surgeons could lengthen the tube.
The oesophagus, being artificially constructed out of a piece of windpipe and I don't know what else, couldn't grow with the child . He was, I think, around five, at that time.They had to find some tissue they could use. I can't recall now, how they extended that tube, but they managed to add a small measure to the length.
The head surgeon finally appeared and seemed conservatively pleased. He said it should be okay for a couple of years. Of course he wouldn't be able to eat solids for a while and eating would continue to be painful and prospectively dangerous. The greatest danger being, the food getting stuck at the opening to the stomach. Another problem was acid reflux ,damaging the oesophagus and even his teeth.
He offered an option that would be far less painful in the long run. He could permanently implant a stomach tube directly into the stomach from the outside. Ian would be fed through the tube by a pump that he would have to be attached to, three times a day for a couple of hours at a time.
It would restrict his life quite a bit and his days would revolve around the pump. He would have to take a portable one to school. He couldn't swim or engage in body contact sports. He wouldn't be able to go camping or do a thousand other things. It would compromise the quality of his life and make him a freak at school. The upside?
He wouldn't be in pain any longer. There wouldn't be lumps of food
stuck in his throat any more, or lodged at the opening to his stomach.
They could put a balanced diet and high nutritional supplements in the pump. He would gain weight and get healthier at last. His parents had a lot of thinking to do.
They didn't take too long to decide. No pump. If life was a struggle for Ian, the rewards were worth it. He wouldn't be attached to a machine. He would be free to move around and do whatever he wanted. He wouldn't have to give up swmming,
which he loved. He could get dirty and play rough.
Life did continue to be a struggle for him. He hated eating. It hurt. He would get up from the table and walk around to try and help the food to go down. He still does that. His eyes always showed shadows of pain and acceptance.
Eventually he had to have more surgery, and an examination revealed that he had ulcers in his stomach.
He thought the increasing pain was just something he had to accept and never mentioned it.
Mum and Dad staunchly continued to refuse the stomach tube and they watched him grow up, pencil thin , and struggling with pain and constant bouts of pneumonia.
But, that kid was into every activity, every sport, boy scouts and camping. He wasn't afraid of anything. Life had already thrown everything bad at him.
He wasn't going to miss out on anything. Mum and Dad had made the right decision for the type of guy Ian was.
He became an Eagle Scout(the highest achievment in scouting). He was brilliant in school. He won math awards and science awards. It turned out that Ian is a genius. His brain functions at such a high level, that he may solve some of the most pressing problems in the world some day.
He's loving and sweet and compassionate. He's passionately devoted to saving the polar bears of Canada who are seriously endangered. He's happy.

And,when I see that pain in his eyes, and he quietly gets up and leaves the table,
I never let him see the tears in my eyes. He wouldn't understand.

( To be continued)

6 comments:

  1. My heart goes out to the poor little fella. Any hope that they'll be able to come up with a permanent, pain-free solution? Any hope that that little fella might enjoy eating one day?
    This is so sad.

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  2. HE's fifteen now.There is a future hope in cloning organs,but that's a long way down the road.Chances are,the constant pneumonia and extensive lung damage may become a priority.

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  3. I was going to make it into two more chapters but decided to get it all out in one go.Easier on the heart.

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  4. Anonymous5:57:00 PM

    Thanks ever so much"JEANNIE"for sharing with everyone ...the pain he has suffered for fifteen years
    (15)...and still going strong...you are right to call him a genius...the best is still to come...I applaud his parents for keeping the faith and beliefs to let him lead a normal life as possible...your family had so much heartache...thats what love and a close family unit will do ...a shoulder to lean own.Tell Ian ,he has a lot of friends here...Nan wants to my pamplets to put in school to help get the kids involved...our school district has 69 schools...3 junior colleges...2 medical schools...Bossier City is just accross the river(RED RIVER)I have shared his story with the ladies...there was not a dry eye in the crowd..they say this is a worthy cause...Hope Arkansas...Bill Clinton's home is just across the state line about ..100/200 miles...going to get dinner now just wanted you to know what happening here...you know my large family...I am the baby...what baby wants ,baby gets..I need help...even from my sister's husband ...the preacher...(GIGGLES)

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  5. Ian will do great things in this world.The bear population is down.The bears are drowning.Ian is very passionate about that.He might solve our global warming problem.I think he'll get involved with evironmental issues.We have enough mathematicians

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  6. Justin is staying over night.He's going to Ottawa with a friend tomorrow.I think he may have a lady friend there.He goes there a lot.My other grandson Josh was also over tonight to borrow my truck.He' s not happy with the courses he's chosen.

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