And are you still having the headaches, etc. from the spinal fluid? My sister said there is a procedure they can do, some kind of spinal "block" that would relieve that. Her son got monster headaches after a tap, and had the procedure for relief. That's number one problem.
Number two problem....can you find a patient rep in the hospital into whom you can put the fear of God....."if you aren't watched, you're going to raise holy hell" who will then pass on the fear to the head nurse? Or just a mask to wear over your eyes, with "IF YOU DON'T DRAIN MY INDIANA POUCH EVERY THREE HOURS, IT WILL EXPLODE ALL OVER THE ROOM. SEE ARROW BELOW."
It does seem like every precaution a person takes can be ignored or bypassed by someone who isn't expecting something out of the ordinary. Maybe you could set up an automatic email or phone call to the nurses station that would say, every two hours "who has drained Patricia's pouch?"
Or, let us do it. We'll start a schedule. Send us the phone number of the floor office, and we'll take turns calling and asking if your pouch has been drained. We can post the "I and O" here on line, and keep track.
Anything we can do to help, we'd do.
Stephany in Iowa
