Another New Nurse

A shorter one tonight, to keep people in the loop. 

A visiting nurse who specializes in wound care came to the house today to meet with Ron and me for almost two hours.  She had never seen anything like Ron’s PleurX catheter.  We are finding that is pretty typical.  Unfortunately, she could not see any way to stop the weeping fluid . . . and it is still weeping.  She used a special dressing that should stay in place for a few days to protect the skin where it is raw and irritated.  But, the dressing does nothing to prevent infection, so we had to smear antibiotic ointment over it and she is not sure how that will impact the sticking power of the dressing.  She will be back out tomorrow to check and may try a different dressing using silver, which apparently has antibacterial and antiviral properties.  One option, she said, could be to maybe fit an ostomy bag over the site to catch the fluid, but if we do this, there would be no way for Ron to use the special dressings that are included in his PleurX Carefusion drainage kits, so again, no way to prevent infection.  Also, it would mean he has one more thing hanging off his body that requires attention.  Tomorrow when the wound care nurse is here, the plan is that she will call the U of M surgeon who placed the catheter in and see which option might be best.

Ron and I finished this appointment feeling like there is no good answer.  There is no way to make his body stop leaking.  There is no way to prevent him from getting infection, other than frequent bandage changes, and even with that, we still have to figure out how to get surplus dressings through Carefusion.  The nurse is trying to prevent skin breakdown, which is good, but the leaking problem seems to be unfixable.  However, in talking about it tonight, Ron and I are convinced he cannot be the first person ever to have this issue, so maybe we need to have him return to U of M to see a PleurX representative, or something.  We are still figuring it out.

We also had an almost hour long call with West Michigan Cancer Center and shared our concerns with their Quality Improvement representative.  She seemed to take us very seriously and told us that what had happened with the oncologist and nurse was unacceptable and would be addressed.  She is also helping to get Ron transferred to a new doctor and nurse team, without repercussions for our complaints or disruption to his care.

I spent many more hours on the phone today, as well as emailing and texting.  Today was less about fighting against specific people/things and more about exploring resources and possible options and alternatives to help get us back into hospice most quickly.  I will spare all the details and just say there are ideas being thrown around and many allies who are in our corner.  We still have not heard from Novartis about the patient assistance for his injection. 

Thank you for reading and thank you for your support.  We continue to be blown away by people stepping forward to help.  Sometimes I have a hard time coming up with how to ask for help or what specifically to tell people to do, but I appreciate all the offers and promise I will take folks up on them as we need them.  And for anyone who is calling me or emailing me or texting me that I haven’t gotten back to, forgive me.  I am backlogged, but I promise I will get to you.