Family

Well, the situation with my niece, Heather, is complicated at best. To refresh: she is 3 years old and suffers from mitochondrial disease. Her symptoms are that her entire digestive system is non-functioning. She’s never had a bite to eat. She’s had 7 surgeries in the past to install feeding tubes that go directly into her intestines (she’s had 7 because, in time, the tubes get infected and have to be relocated).


In addition to those complications, she’s now legally blind, has a stroller/wheelchair combination and has mentally and physically regressed to that of a 9 month old. Doctors say she should have died long ago, yet she’s a trooper. Despite only being fed fluids through tubes, she continues to grow in size (in fact, she’s only 10 pounds lighter than her 7 year old brother). Under normal conditions, she’s in no mean and doesn’t know what she’s missing since she never experienced anything else.


Yet the past two weeks have not been good. She was brought to the Floating Hospital for Children two weeks ago to have her feeding tubes relocated. But after the surgery, her face began swelling. It got so bad that she was rushed to the emergency room. After being put in the intensive care unit, her face continued to swell. When it got so bad that her eyes were swollen shut and her trachea (spelling?) was literally pushed aside and she couldn’t make sounds or breathe, they performed an emergency surgery to remove the feeding tubes and relocate them. The assumption was that the tube was blocking blood/fluid from leaving her head.


That was Sunday. She’s currently still in the Pediatric Intensive Care Unit, with oxygen tubes in her mouth (and into her lungs…which have fluid in them). She’s got 7 various machines hooked up to her to monitor her. Her face is still swollen (though not as bad as it was when I first visited her on Saturday). Still, her motionlessness (is that a word?) makes her look worse than I’ver seen her in over a year.


The prognosis is that the swelling will continue to go down and she’ll no longer require the oxygen.


Now my sister-in-law, who also was recently diagnosed with the same disease, also has feeding tubes. Her symptoms hit her all at once last spring when, at 33 years old, she suffered a stroke. Not expecting to be in the hospital this long, she didn’t pack much. My brother had to drive in yesterday to bring her changes of clothes and her own medications. He’s coming back tomorrow to take my nephew, Nick, to another Boston hospital (Mass. General) to receive some tests to see if he is exhibiting signs of the disease (being hereditary, they are confident he eventually will).


Ugh. It’s been an exhausting week. And this morning, I woke up to a minor sore throat (which could prevent me from visiting Heather in the ICU again this afternoon). To make matters worse, I saw one of those damn Friendly’s commercials (a local restaurant chain) that shows one of those (non-existent in real life) families where everything is wonderful with their 2 kids, dog, white picket fence and no disease, graffiti, poverty, natural disaster or acne. Apparently, the management and advertising agency for Friendly’s think we live in a 1950’s sitcom.


I hate that restaurant.

9 Comments

  1. Comment by David on August 31, 2005 3:01 pm

    Friendlies has always had crappy service, so you aren’t missing much. I feel so bad for your family. Your brother is such a nice guy.
    I’ll keep them in my prayers.
    Peace,

  2. Comment by Brad on August 31, 2005 4:32 pm

    You and your whole family are definitely in my thoughts.

  3. Comment by Underling on August 31, 2005 5:07 pm

    If there were a Friendlies in Oklahoma, I would boycott them for you.

    Your family doesn’t ever seem to get to even rest to breathe anymore. One thing after another…I keep you all in my prayers.

  4. Comment by Underling on August 31, 2005 5:07 pm

    If there were a Friendlies in Oklahoma, I would boycott them for you.

    Your family doesn’t ever seem to get to even rest to breathe anymore. One thing after another…I keep you all in my prayers.

  5. Comment by Thom on August 31, 2005 10:31 pm

    Thinking of you and your family and sending good thoughts your way.

  6. Comment by karyn on September 1, 2005 12:05 am

    Oh Karl.

    Let me know if there is some remote possibility I can be helpful in some way. I’m thinking of you, and your brother, and Heather and the family in its entirety, really. Realizing your Agnostic / Athiestic tendencies, I won’t harp on it, but I will send out extra prayers anyway.

    You hate FRIENDLY’S? In the face of this continuously unfolding horror you can summon up anger for a restaurant chain? You are something else. Guess the anger has to go somewhere.

    (I’d live in a 1950s sitcom if they’d let me. But you knew my parents. *shrug* We ain’t 1950’s sitcom material.)

    Much Love, Snarl.

  7. Comment by karyn on September 1, 2005 12:06 am

    Oh Karl.

    Let me know if there is some remote possibility I can be helpful in some way. I’m thinking of you, and your brother, and Heather and the family in its entirety, really. Realizing your Agnostic / Athiestic tendencies, I won’t harp on it, but I will send out extra prayers anyway.

    You hate FRIENDLY’S? In the face of this continuously unfolding horror you can summon up anger for a restaurant chain? You are something else. Guess the anger has to go somewhere.

    (I’d live in a 1950s sitcom if they’d let me. But you knew my parents. *shrug* We ain’t 1950’s sitcom material.)

    Much Love, Snarl.

  8. Comment by matt on September 1, 2005 1:52 am

    sending many thoughts of hope. Hang in there.

    …and stop watching tv.

  9. Comment by Donny on September 16, 2005 6:45 pm

    Your site is realy very interesting!

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