Sunday, May 4, 2014

Debridement and Nourishment - The Feeding Therapy Experience

Forgive a little vagueness, again, this is the story of a family, not just mine, and it's only what I see and feel, that I can say.  And there are some things that don't belong on the Internet, even for me.

When a wound occurs, like a burn- a wound likely to catch infection and fester into something worse- it's treated with a process called debridement.   Debridement is awful. It's basically vigorously scrubbing out an open wound to eradicate all possible sources of infection. It is raw, it is excruciating, and it is sometimes more traumatic than the wound itself.  But before the wound can begin to heal, all of the filth and bacteria must be eradicated.

If you've called or texted or facebooked without a response, I'm sorry. You see, I have been debrided. I have been scrubbed and disinfected to the very core, until I stood without my skin. Completely exposed, flesh and bone and no protection, whipped by the elements.   As if being baptized in agony could rebirth me. I have struggled to breathe. I have teetered on the precipice of the great, yawning chasm of black empty space and wiggled my toes into the abyss.   I have bled and I have wept until my face dried into an unrecognizable, red and wrinkled mess, dehydrated from endless swipes of a paper towel in an attempt to appear sane and rational.

I have spent sleepless nights listening to children cry for their mothers in the empty, echoing corridors of a hospital. A little boy whose legs did not propel him.  He could not get out of bed, his mother was absentee, so he simply called again and again, 'hello?' for hours, until his voice cracked and his calls gave way to the choked cries of an abandoned child.  My heart, already raw, had no filter for this kind of torment.

The sun has risen and set each day regardless of my ability to cope with life as it presents itself. The calendar does not wait for me to get my shit together and my children don't stop growing and needing so that I may collect my wits and carry on. The garbage still has to go out, the dinner has to be made, the clients attended to...

And in the midst of all of this, a gift I didn't foresee.  Jackson completed feeding therapy in record time, and was able to completely eliminate tube feedings from his diet. From 1400 calories through the belly (or 85% of his daily needs) every day to everything by mouth.  It has been almost two weeks since he was plugged in.  Here at home, I'm finding some feedings are needing less structure.  Tonight I watched him nearly inhale 5 fish sticks and chocolate laden high cal formula.  No prompting needed. I feel a little guilty that maybe I haven't been fully appreciative of this miraculous turnaround.  This child who had lapsed into being almost exclusively tube fed, cramming food into his mouth, two bites at a time. The little changes in him- different behavior. Better coping skills. Hunger. Mommy, I want fruit snacks.  The boxes and cans of food in my cart that I never in a million years would have bought (packaged and processed, lord have mercy!) but am now almost giddy to schlep up to the checkout.

And just like he was taught, day in and day out, in a place so full of suffering, to take one bite at a time, so was I.  So many things I've tried to fix by elimination.  'If I don't eat this, say this, think will get better. I'll be able to avoid the pain. I'll be able to do what I have to do. Everyone will like/understand/support me.'  When maybe the whole time I should have eaten some metaphorical processed, canned ravioli and been happy to eat. Sometimes Chef Boyardee is freaking delicious. The more possibilities for 'failure' I eliminated, the more I narrowed my experience and my ability to cope. I limited my own happiness to the point of being starved for it.

So now, as I pull fish sticks out of the oven, measure out 57 grams of Lays potato chips and load the formula down with Hershey's syrup, I can be thankful. I know the steps to take for Jack when he won't take a bite.  I've helped him learn to eat.  And in the process, I'm taking bites of my own life, too.