Sunday, December 09, 2012

Sometimes it is the Little things...... Nasogastric intubation

Doesn' t that just sound nasty.  It is.  No matter what they say or call it.  It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.

Essentially they stick a tube through your child's nose into your stomach and feed you that way.  (It is one way that relieves Chef Walter from having to feed the kids.) 

Kids have a very hard time keeping up their eating.  It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese.  The fact is they can't eat a whole lot of the time.  There are so many things that make their stomachs upset.  Chemo, radiation, pre-meds for blood products, mouth sores.  When they are ready to eat while they are on steroids the food they want is white and salty.  Even then they don't like Chef Walter's food.  (Not that he would ask or care or even acknowledge he should be cooking for them.) 

It is a big battle.  The older kids understand.  seldom do you see a teenager with a NG Tube.  They will have none of it.  Mary-E was very very savvy about them.  She would ask what the limit was and would not go below it.  She knew when she had to start eating and she did. 

The little ones are less able to be bribed.  They hurt, or they don't want to eat and no amount of bribery will help.   Remember our favorite little Robin.  Mouth sores=closed mouths.  As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."

So the tubes have to happen.  Like everything in Cancer World it is just one more thing.  It is one more reminder that we are set apart from the rest.  We don't cure our children with good food and good sleep and good stories.  We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain.  We allow people to experiment and poke and prod and cut and paste and do endless things to them.  Why?  because we have no other choice. 

For reasons we don't understand we find ourselves having to let it happen.  It is what stands between ourselves and total utter despair. 

One thing that helps is other parents in Cancer World.  I have been corresponding with a mom in New York.  Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure.  A couple of fellows have crossed her path and not in a good way. 

I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest.  They have been in this trench before with other parents and if they did not understand they would find another area of work. 

I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years.  I worry about them. 

Hoping for less damage in my wake as we travel through Cancer World.

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