Helpless again

The feeling of helplessness will come again and again. Even more so as I’m currently in dysphagia clinic when I see quite a number or people whom I know will have little chance of enjoying the pleasure of food again.

This feeling of helplessness was most felt when I met T, a 14-year-old Indian, diagnosed with Wilson’s disease. He can barely walk, and is mostly wheelchair-bound. He has tracheostomy to aid breathing and has been on nasogastric (NG) tube feeding for more than half a year. And yet, he is the most cheerful and amiable patient with swallowing problem I’ve met.

To assess T’s swallowing function, we have to perform Flexible Endoscopic Evaluation of Swallowing (FEES). This procedure involves inserting a scope with camera at the end, through his nose till somewhere above his vocal folds. It’s a most uncomfortable procedure. In addition to that, he was fed a most distasteful ‘food’, whereby some patients have been induced to vomit. However, he did not even complain. When he showed to much difficulty to handle the swallowing after a few spoonfuls, we decided to stop. And he still requested for another spoonful, because he hoped to be able to swallow better so that he could take out the NG tube. After that, he had to do suction to remove secretions from his trachy. It’s a most painful procedure, clearly seen from the grimaces on his face. He has to perform suction 4-6 times a day.

He kept requesting to have his trachy and NG tube removed. He wants to be able to breathe and eat like any other person. Unfortunately, we can’t do that as this would endanger him. We suggested doing swallowing exercises to help strengthen muscles for swallowing. One of the exercises involved lying on a bed. As a student nurse demonstrated, he stood up and walked closer to observe better, even though he had great difficulty in balancing. I was very moved by his motivation.

As T moved out of the room, he gave a smile and saluted to all the staff in the room. Meanwhile, my colleague and I were washed over the feeling of helplessness as we couldn’t do more for him. I was very humbled by T, that despite his young age, he showed so much bravery in enduring pain and suffering each day. And that he continues to hold on the every thread of optimism there is.

~ by enniey on February 14, 2009.