My 67 yr old mother was dx GBM Jan 08. Surgery 1/25/08 and one round of chemo and radiation followed . After surgery she was doing very well but had developed what we assumed was a cold and cough & sinus infection which continued to get worse. Affected her equalibrium, headaches, sinus conjestion, severe coughing....etc. Her PCP finally cultured her sinuses and found 'pseudomonas aeruginosa', an infection transmitted to her during her tumor resection surgery. They treated her with Fortaz 2x's a day for 10 days (IV therapy) which ended one week ago. Sunday she got dizzy, lost her balance (while walking with a walker) and fell. They re-cultured her today and the infection is still there and going strong. They are now going to try to treat with some type of antibiotic nasal inhaler.
My concern...they have decided NOT to progress any further with her treatments. No chemo...nothing. Her baseline MRI today showed that the tumor has shrunk somewhat with the radiation and chemo. They have already postponed her continued treatment for a week and now say it will be at least another month or two before they will start back with any treatment due to the infection. They don't think she can take it.
I am concerend about this. Everything I have read indicates that aggressive treatment is needed to stay progression free. The hospital has asked if my father wants to file an incident report, but he is afraid to as Mom is in a clinical study and he thinks they will treat her unkindly. In addition, I am concerned that because she is in a clinical trial, if she doesn't stay on the course of treatment she won't be eligible for the clinical study any longer. I think an incident report should be filed so this doesn't happen to anyone else. They believe the bacteria was transmitted thru the tube in her nose during surgery. I am 1000 miles away from my parents and my mother is so sick now that my father is consumed with just taking care of her. I want to intervene on their behalf, as this infection has caused additional travel and medical expenses, not to mention using her Home Health visits on Medicare to receive the IV treatments. She is going to need them later down the road.
Can someone please give me some advice or direction? I don't know where to turn. I am inclined to go to the risk managment department of the hospital. I can't imagine they wouldn't want to make it right. This infection has completely wiped her out. She said the surgery and treatments afterward were nothing compared to this infection. She sleeps 21 out of 24 hrs a day.
She is seeing an ENT tomorrow. Any help or advice would be greatly appreciated. Thank you.