Problem #________________.

NASOGASTRIC TUBE:  A tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach. It is a flexible tube made of rubber or plastic, and it has bidirectional potential. It can be used to remove the contents of the stomach, including air, to decompress the stomach, or to remove small solid objects and fluid, such as poison, from the stomach. An NG tube can also be used to put substances into the stomach, and so it may be used to place nutrients directly into the stomach when a patient cannot take food or drink by mouth. <medterms.com.

The liver is problem number___________________.

Docs have been watching his liver due to high bilirubin and upon ultrasound, it is indeed, inflamed. His kidneys are also working overtime. As I type this I am afraid, and yes, I did cry when they approached me about NG. However, Ashton has an inherently resilient inner structure. Many kids who have had as much poison, medications, antibiotics, anti-fungal, anti-blah-blah-blah- freaking blah pumped through their systems as he has are in BAD shape. Like, organ- failure-kind-of shape. He is not anywhere near that. He is like, Iron Kid in misery.

However, (and I was not aware of this before yesterday) if someone is on TPN, or Total Parenteral Nutrition, meaning, he gets a drip through his port 24 hours a day in order not get his nutrition, it can wreak havoc on your liver because the “nutrition” is not processed through the stomach; it’s a purposeful bypass. It all goes through that amazing organ we never even think about: the liver. I never thought about the liver unless I had a hangover.  His TPN is a combo of sugar, carbs, proteins, lipids, electrolytes, and a few other things I can’t spell.  His liver is like, shut the hell up! Stop it. I am done with this shit. Leave me alone.

Problem then becomes how to feed him.

When anyone goes through Chemotherapy of the types Ashton has had, they usually end up on TPN if not for the mucositis (painful swallowing), and nausea, it is very often because the chemo kills everything <more DR. Erin info. By everything, I include the taste buds. So, if you put mucositis, nausea, and anything you put in your mouth tastes like nothing, what would be the desire to eat?

We have seen so many, most all the kids around here, actually, with tubes out the nose and taped to their cheeks. (NG tubes) Now I know why. Their liver cursed them out and said, hey man, use your damned stomach! I have other shit to do.

They want to do it. I said no.

Not yet. Why? Because he is showing interest in real food. I do not want to disrupt that natural process. I have spoken with other parents and they all say it’s a nightmare to get the kids off the tube. They are satiated and they have forgotten what the glory of real food is like. They have forgotten about crunchiness, saltiness, sugar…basically they have no hunger cues, like an anorexic, but one who maintains weight artificially.

Ashton smelled my soup two days ago. He said, “that smells like something.” I said, “yes, it is food. Wanna try some food?” He said, ok. So I prepared bland, white rice with exactly 7 black beans in it, per his request.  ( sneaking in some salt) in the hospital kitchen.  He ate three bites.

That, to me, ladies and gentleman, deserves a standing ovation!

We have 4 days to prove he can eat, even a little. I do NOT want that damned tube.

 

One Comment

  1. Lauri H.

    Praying for taste buds
    Praying for food
    Praying for eating
    that tastes very good

    Praying for liver
    To rock and to roll
    And kidneys be happy
    This all is our goal

    Praying no tube
    And praying he heals
    Snd praying eventually
    For kicking real meals

    you got this Ashton and Erin!

    Surrounding you in love and all things good.

    Xoxo
    Auntie ladybug. ❤️

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