Wednesday, August 13, 2014

Failure

The Dancing Queen continues to suffer.  Her pain is at its worst in the morning.  She vomits at least once a week.  We have added so many meds to help.  Some seem to be making things slightly better.  She is less swollen these days, but her pain continues without abatement. And her doctors have given up finding an answer and have no other suggestions for help.

This morning, as she cried in pain, writhing on the floor after vomiting, I scooped her up and held her close.  I begged her to tell me she knew I was doing all that I could to ease the pain.  She complied.

I whispered in her ear that I wouldn't stop searching for an answer until I could find her some relief.  She said: "I know, mommy." Her voice was filled with such resignation, such wisdom.  She knows I will probably not find a solution.  And, in that, I have failed.

I realize that it is not my fault that she is in pain.  I know that she doesn't blame me.  But if I can't keep her alive, I ought to be able to keep the pain away.  And I can't.

Isn't one of the main points of hospice to ease the pain of the dieing? Why is it that my dieing daughter is in pain every single day of her life?  Not a little pain, but a lot of pain.

And she's still not eating well.  We've lessened the nausea through regular doses of zofran, but she fills up within a couple bites of food.

Of course, I've done lots of research to try to find some answers since the doctors seem to be of little help.  The one thing all my searches return me to is "Palliative Care of Heart Failure", written by a group U.K. doctors. Much like most things I've read, the guide states that eventually heart failure leads to nausea and vomiting and less desire to eat.  But this guide also provides a suggested aid:
Maintaining adequate nutrition is important and difficult. Small, frequent, easily digested and appetising meals are required. Alcohol can be a very useful means of improving appetite, taking in calories, and improving mood and general self-esteem.
Obviously, the guide is written for adults and giving alcohol to my six-year-old would not only be frowned upon, but illegal. So, I'm left with small, frequent, easily digested, and appetizing meals.  Give me a break! Easily digested and appetizing don't really go together.  The guide's statement that "maintaining adequate nutrition is important and difficult" is a ridiculous understatement and a laugh.  F*** YOU HEART FAILURE!  F*** YOU!

1 comment:

  1. I say what you said in your last sentence!!!!!

    Best,
    Bonnie

    ReplyDelete

Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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