Friday, June 05, 2009

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)

66 comments:

  1. Anonymous9:17:00 AM

    Thankyou for sharing with everyone again,I know how hard it was to recalled the heartbreak.I and others like me will be praying for Ian.People could take a minute and learn from this brave young man.
    With all his pain,Ian thinks of helping others.
    Ian has done more than most people in a lifetime.
    For all his pain,he still gives from his heart with love.What a great guy,you know everyone here is praying for the very best.
    It made me sat back and take stock of my life.
    Tell Ian's parents that "GOD" gives special children to very special people.
    Ian still has a lot to do,he will fullfil his destiny.Be it a pediatrician or rock star or whatever he desires.
    The stem cell research is back in full swing,we can be hopeful for a lot of cures...I know it was hard "Honey" .I love you and my prayers is with Ian. NEE

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  2. Katherine9:54:00 AM

    Yes, again thank you for sharing that story. What an amazing kid. He has done more in his short years than most in a lifetime. How proud of him you must be.

    I hope they find something to cure this terrible disorder, and with stem cell research getting back into activity, this and many other disorders have a chance of a cure.

    :)

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  3. Thankyou ladies for your kind remarks.
    At this time Ian's fate is undecided.I think the only available option right now is the stomach pump. Maybe in a few years someone can help him.

    His older sister is stuying to be a scientist. Maybe her research will go in that direction.

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  4. Their family is devoted to helping others. My son Steve takes special needs children camping and on fishing trips.He is a scout leader and has a special troupe of scouts, all handicapped.His wife and daughter also work tirelessly for handicapped children.Ian landed in the bosom of the right family.

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  5. Katherine8:26:00 PM

    What a brave boy Ian is, absolutely amazing this story and that of your family Jeannie. I hope that one day soon Ian will be able to live free of pain and fear...:)

    Happy Friday Gals!

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  6. Anonymous8:50:00 PM

    Hi Jeannie
    Did you find the lady I was telling you about?
    Hi Katherine.

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  7. Anonymous8:55:00 PM

    Jeannie,heads up girl,we might just reach some one here.
    I know it's hard,but if the stomach pump is the only option,we will take it,all Ian need is a little time ,research is going strong now,sweetie I have a good feeling about this.

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  8. Hi nee, This story will have a happy ending some day. But, it proves you can live a happy and productive life even if you have a serious health problem.

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  9. Anonymous9:34:00 PM

    I am in high spirits tonight.How is every one.

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  10. We're all good. How's your leg?

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  11. Gosh, I love the weekends.I can spend time with my Brian.He can hardly wait to get home on a Friday night.

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  12. Anonymous9:40:00 PM

    I have been to the Eliane Z's blog,thats really the way she spells her name..I can only get there by clicking on her name,I left her a thankyou,I know you want to talk to her,she is on part one of the story,at the bottom comments,

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  13. Unfortunately, he falls asleep by ten.Then he's up at six in the morning, humming cheerfully,the big jerk.He's a morning person.I'm not,I'm cranky.

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  14. Anonymous9:43:00 PM

    Brian is still a horhy devil,thats the way you know they are happy with thrie soul mates.
    My leg,I came through with flying colors and the choochie intact,hahaha

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  15. Katherine9:44:00 PM

    I love weekends...time to relax and just be a vegetable if I want to...lol

    :)

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  16. I will get in touch with her.It sounds like her surgeons had more to work with than Ian's did. often the oesophagus tube is there but it is just not connected.That's what we were hoping was Ian's situation,but there was only a little tiny piece of a tube in Ian for them to work with.

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  17. Anonymous9:46:00 PM

    Brian is humming because he stole the choochie,haha I am a moing person too,Gil is not unless something else is on his mind.

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  18. Anonymous9:49:00 PM

    You got that right Katherine,I love the weekends.

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  19. Hi Katherine.

    Nee,you would manage to bring your choochie into the conversation even if we were talking about brain tumors.That's why I love you.You are just bad to the bone.

    But it's fun to be bad.Where have I heard that before?

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  20. Anonymous9:50:00 PM

    How did your tests go ? Or was it Nana's?

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  21. My tests.They were testing my immune system.They do it all the time.And they test all the things that are toxic to me.I have the same problem as 'the boy in the plastic bubble',only not so bad.I had to live in a special environmentally controlled room for three years.

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  22. Anonymous9:54:00 PM

    I used the names you gave me,I had bad to the bone,hell I threw it into outer space,but it is to be bad.Well my choochie isn't going ..Flop..Flop...Flop..(GIGGLES) Boy I am hot tonight.

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  23. Ha!!!I remember the flop flop.

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  24. Anonymous10:00:00 PM

    You have to be careful about a lot of things that you eat and drink.I am so glad you are immune to Brian,if not you would be at the doctors all times,knowing the ever-ready man the "ROCK"hahaha

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  25. Something about naked gay men dancing the Macarena.

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  26. If I was allergic to Brian I wouldn't care,even If I had to wear a space suit to bed...Although that might make some things a little difficult.

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  27. Did you hear about the way David Carradine died? In the orient somewhere in a hotel, hanging by a rope in the closet, with one end around his neck the other end tied around his penis.

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  28. He was Bill in 'Kill Bill'.
    A 72 year old man should know better.

    The coroner believes it was an auto-erotic sex accident.That's going way too far for your jollies. He was my hero as a kid in 'Kung Fu'.That was a tv show if you're too young to remember.

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  29. Anonymous10:16:00 PM

    Jeannie,
    Let the story stay up all weekend please,I would like for Ian's dad/mom/sister to see it all together.Print them a copy.I am not being selfish,Ian is the one that started me wanting to help my bears and Global Warming.

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  30. I told Ian about you and how you have started a group in your town to fight global warming and save the bears.I told him you may work with Al Gore's people.

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  31. His family has copies of the first three posts. They liked the way I told the story.That made me happy.

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  32. Anonymous10:24:00 PM

    We get Kung Fu here that runs old t.v. shows..TV Land..I seen Kill Bill,Uma Thurman and Vivica Fox.I heard he was a crazy/weird old coot.

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  33. Anonymous10:29:00 PM

    I remember you telling me your son had tears in his eyes when he read the story,Sis read it and she just cried,she says all these no good S.O.B.have it good ,but not to worry he will come through this too,so he can finished the work that he was put here to do.

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  34. He was one of the bad boys I looked in on from time to time.He was married five or six times.

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  35. Anonymous10:34:00 PM

    We are waiting to here from Gore's people,Daisy have received some pamplets from his office,it's looking good,Gil says I can have the space,so we won't have to rent a place..

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  36. Katherine10:35:00 PM

    I liked Carradine in the Kung Fu movies and then in the TV show with Chris Potter...Kung Fu THe Legend Continues...

    the details of his death sad though

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  37. I'm glad Sis liked my story.Or,I should say Ian's story.

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  38. Anonymous10:37:00 PM

    David was a bad bob ,but a nice guy,a little crazy,but ain't we all.

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  39. You're right Katherine,He continued the same character in a later series.I forgot that.

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  40. No one wants to die while they are masturbating,very undignified.

    I have heard about auto asphyxiation.The trick seems to be to know when you're going to pass out.Some people like to live on the razor's edge.

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  41. Although my husband has been heard to say he wouldn't mind dying in
    'flagrante delecto' with a gorgeous woman.

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  42. Anonymous10:44:00 PM

    Well Ian is yours so you can say either one.
    Gil say you could have gone either way,an artist/writer,he likes the way you let your words flow..he says writing is his passion,but he had to get a job to make a living,He says he still dabbles a little to keep his skills horn,he is writing my family story.

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  43. Katherine10:44:00 PM

    It is hard for family i bet when details like that come out...I feel for them because it is not only undignified dying that way but to have the world know.

    Like drunks I have taken care of, tough to watch them act out

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  44. Soory misspelled that .It should be 'delicto' I'm forgetting my basic Latin.

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  45. Anonymous10:51:00 PM

    I will never want to die that way,I like Brian's idea,if I have die while being poked,sweetie you bet your britches I will be riding the "POLE"

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  46. He has two daughters who probably have kids.They don't need to remember their dad/grandpa that way.

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  47. Did Gil read 'Boy With No Throat'?

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  48. Anonymous10:57:00 PM

    Katherine, what line of work are you in?

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  49. Anonymous10:59:00 PM

    Yes he did and also made copies,he made copies for the people in his firm.

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  50. Anonymous11:01:00 PM

    Gil has a copy of the Major also.

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  51. Katherine11:04:00 PM

    I am about to graduate law school CC...right now I just work in a store to pay bills etc

    I also am writing a book as hobby

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  52. I'm glad he enjoyed them.

    My friend made some copies of 'Jakey's Dream'.That was her favorite.I was flattered.

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  53. The best of good luck passing your Bar exam Katherine.I'm sure you'll be a fine lawyer.What will you specialize in.

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  54. Anonymous11:16:00 PM

    We also has Jakey Dream and all the lawyer jokes,you know what he did with those.

    Kathernine ,you go girl,nothing wrong in working to pay bills,been there did that,it's nice to call your own shots.It proves you are not lazy and looking for a handout,I know you get my drift.

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  55. Sorry for my absence, just checking my emails.So, sweet child,shall we call it a night?Or are you still full of piss and vinegar as we say up here in Eskimo land.

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  56. Katherine11:36:00 PM

    Jeannie

    I will specialize in Environmental Law...I think we need to do more to protect what resources we have...:)

    CC

    I get your drift girl...lol Trust me no handouts for this chick. :)

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  57. 'WAY TO GO KATHERINE!' That's my girl.Just what we need. Someone has to put the brakes on our miindless destruction of our planet. I understand a lot of young people are getting interested in environmental law.

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  58. Anonymous11:46:00 PM

    Katherine,you will have a lot of business there in L.A. if you are a divorce lawyer.

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  59. Katherine11:48:00 PM

    Oh yes CC, here in LA divorce lawyers get a TON of money for those mid-life crisis fools who decide to leave their wives for some tart. I realize I could make a bundle relatively fast but I cant stomach the crap that comes with it ya know?

    The environment has always been my choice...so much more important...

    :)

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  60. Anonymous11:49:00 PM

    Way to go girl,just like ghost busters ,I know who to call.

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  61. Anonymous11:52:00 PM

    Yes sweetie I will call it a night,I will see you and Katherine tomorrow..Please leave the posts up for the weekend.

    Goodnite dear friend,may all your hopes and dreams be full-filled..
    Luv...NEE

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  62. The money won't be as good but the satisfaction you'll get will be worth it.

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  63. Katherine11:54:00 PM

    Sweet dreams CC and Jeannie

    :)

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  64. Crack the whip over some of those careless big industries.
    I think if we each do a little something, whatever we can manage to help the environment,we can stop climate change in the next couple of decades.It only took 50 years to put it in crisis.

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  65. godnight dear friend.I enjoyed your company as always...luv..luv..J

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  66. Goodnight Katherine.Stop by real soon.we'll put the coffee on.

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