Wednesday, March 5, 2014

Day 44 In Boston - She Pulled Out The Feeding Tube

So on day 44, about 1:30 am in the morning, India pulled out her NG Tube (Nasogastric intubation is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach.).

A few hours earlier, after the NG Tube was placed and India was ok, I left the hospital for a nap and shower. I was horribly sick and the break was much needed. 

When I returned, India was sleeping soundly. I settled into the "blue chair" next to her bed and tried to get some more rest. About 20 minutes later, a warning "beep" from one of her bedside machines sounded. The nurse came in, turnded the "bep" off and told me that India had pulled out the NG Tube; I had no idea it had even happened. 

This feeding tube had just been placed only hours before. As soon as it was inserted and nutrition flowing into her tummy, India was herself again; smiling.

I was told the "Resident" Physician wanted to wait and see how she was doing without the NG Tube that was inserted only hours before; I went numb.

The Resident Physician on the night shift had apparently made some assumptions and decided to see if it was time for India to come off her NG Tube.  I asked to talk to this Resident.

When the Resident Physician arrived I was told that India didn't want the NG Tube in anymore. My response was that she didn't want to eat oraly either - so which should we alow her to chose.

The Resident then said that that I shold consider a "G Tube" (Gastronomy Tube [also called a G-tube] is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's an hour surgery.); another surgery that we've worked for 15 years to avoid.

I was upset and panicked beyond words. India is having a difficult time recovering "as is" and another surgery was suggested...

So the next day, India's doctor came to check up her and he gave the order for her to get back on the NG Tube right away.  This was done and went well.  But we had to restain India's arm with a brace so she couldn't reach her nose and pull out the NG Tube again.  

This really upset her.  Imagine only having the use of one arm and all of a sudden it's placed in a device rendering it useless and stiff.  My poor daughter was pleading with me "help me daddy, please" while she cried and twisted in pure frustration; trying to free her arm.

India and I were up almost all night.  I tried to distract her as the NG Tube gave India the nurishment she needed, but I think at in part my child felt as if she'd lost the use of her one limb that worked. I can't imagine the despair she felt.

This photo is just before India went on the NG Tube.  She became so weak that she was a limp as a noodle from lack of nutrition.

Not long after the NG Tube was placed.