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Hard to swallow

I was calm as they said my son was aspirating food and liquids. I was calm as they recommended a g tube and an immediate NG tube.

The experts at the swallow clinic had built an irrefutable case. They had just watched Deane eat solids – fairly runny mashed potatoes – drink liquids and eat a spoonful of applesauce.

With the mashed potatoes, he took an unusually long time – even for him – to swallow. On the x-ray, they saw it pooling just above his vocal chords, threatening to move into his lungs.

With water – flavoured with chocolate to hide the taste of the barium – out of his regular straw cup, Deane was fine at first but then started to aspirate it.

Thicker cream by cup entered his airway. He coughed and cleared some, but residue remained and went down the wrong way.

Applesauce – something Deane doesn’t like to begin with – was next. On the promise it was the last test, he swallowed it … safely.

In the meeting with the doctor and the speech-language pathologist, we heard their recommendations: only food the consistency of applesauce and liquids thickened and fed by spoon. They explained that with his level of aspiration, Deane’s lungs would be continuously irritated and could easily be pushed over into an infection – like the one he had had two weeks ago.

The swallow experts said Deane should get a g tube and, because he won’t be taking in enough liquid by spoon until then, the immediate insertion of an NG tube was necessary.

Despite my long-held and well-known reluctance to give Deane a g tube, there didn’t seem much choice but to accept their advice. I was calm. Deane did not react.

We came home and I prepared Deane’s dinner, thinning it from solid to applesauce. As I fed him, I thought about the foods Deane most enjoys. Does this mean he can’t have the chicken nuggets and fries he eats when we go out? What about his grandmother’s chocolate cake that he adores? Is this the end of the Cheezies the owners of the cottage marina order especially for him?

As the tears began to well, I realized I don’t know many of the realities of g tubes. I am in shock as I struggle to figure out the immediate changes to Deane’s diet. Where it goes from here, I’m not sure. I’m just trying to hold it all together.  

 

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Discussion

5 thoughts on “Hard to swallow

  1. Just thinking of you folks. thx for sharing. Carolyn

    Posted by Carolyn | June 19, 2013, 7:34 pm
  2. Hi Ijeoma — Is Deane losing weight or significantly underweight?

    If you move forward with the g-tube you may want to look into the practice of using real blended food through a g-tube (we had an article about this in BLOOM: http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/06/mom-backs-real-blended-food-for-tube.html)

    Ben had a g-tube and you will very quickly learn how to use it and it will become second nature. I know how emotional this issue is. Take care!

    Posted by Louise at BLOOM | June 25, 2013, 9:35 am
    • Last summer he was at 50th percentile on the CP adjusted growth chart. Since then – since the operation – he has lost weight and now is significantly underweight and going the wrong way. I’ll look up the article on real food. Right now, with the NG, he is eating real food mushed up and getting nutritional supplements. It truly is as though he is ingesting nutrients all day and half the night. Let’s hope this works.

      Posted by disabledfamilies | June 26, 2013, 1:30 am
      • Hi — Just a thought, but Ben lost 20 pounds after his major hip/knee surgery — he was so miserable he stopped eating. Just wondering if Deane has been given enough time since his surgery and rehab to recover? Also, when our Ben was put on a g-tube for feeds all night, he stopped eating during the day because he wasn’t hungry. In the end, he plateaued and it didn’t make a difference. I’d trust your own instincts as you go with what you are seeing in terms of impact. Keep us posted!

        Posted by Louise at BLOOM | June 26, 2013, 9:32 am

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