I have been on the other side of the table, as a parent with a child with a chronic disease. But I was suprised how overwhelmed I felt while standing beside the bed of an 11month old trying to keep him busy instead of him pulling on all the lines in him.
I was amazed to see this little boy smiling and playing and laughing and in his innocence grab at his IV, NG tube, etc.. Observing how after his dialysis his breathing was easier and swelling went down.
The quick thinking when his nares were flairing and he was grunting out of discomfort and unable to breathe. Just the simple adjusting his bed so that the head was higher, and the giggling and activity came back to normal