The wound nurse found that yesterday’s special dressing, to protect Ron’s skin, had soaked through and did not fair too well. She tried the one with silver in it today and will be back tomorrow to check on it. While she was here, Ron drained his Pleurx catheter. The ascites fluid has been becoming increasingly dark since our trip to the ER on Sunday (1/15/12 ). Usually, it is a pale yellow, kind of the color of a pilsner. But, it has been becoming more of an amber ale and today had the appearance of some kind of ruby tinted fruity beer. Unlike a smooth beer, it had chunks in it . . . strands of . . . well, we don’t really know. Stuff. Protein. Mucus. Whatever. Stuff it pulled from his intestinal lining, most likely. Ron explained that while I was at work and he was draining for the visiting nurse (he saved the bottle of fluid for me to see when I got home – he is thoughtful like that), these chunks of stuff started spurting out of the small tube and into his drainage bottle. And then the hose clogged completely. Nothing else would come out. He is now officially plugged with fluid gathering on his belly and no way to drain it from home.
Ron and the wound nurse tried to connect to the U of M surgeon while the wound nurse was here, but that did not happen. The surgeon called Ron back later and, in talking about the fact that the Pleurx is now plugged and would need to be flushed in order to work again, the surgeon recommended that the tube just come out completely. There are risks with this procedure and it sounds like it may not be easy to get it to heal. The tube was placed there last May by “tunneling” into the skin, which will leave a wide hole in his belly where fluid will continue to spill out, without the one-way valve he currently has in place to stop it. And the skin is thin and already red and very irritated. But, with things the way they are now, and as mentioned last night, there is no way to manage the possibility of infection or to stop the weeping leak at the base of the tube. So, it seems that the benefits outweigh the risks. U of M is coordinating with the West Michigan Cancer Center
We still do not have an answer from Novartis about the patient assistance for his injection, so continue to be without hospice until then. Apparently, WMCC is closely monitoring his former oncology nurse to make sure that she completes the follow-through on her end related to the appeal application she submitted. We expect to hear something by the end of the week. On a good note, we are scheduled to meet his new oncologist and nurse on 1/31/12 and his new oncologist is already proactively working with U of M to schedule and coordinate regarding the Pleurx removal surgery.
Ron and I continue to be blown away by the offers of support, connections, resources, ideas, prayers, good vibes, cards, and all the little and big ways people are helping us out. We love that so many people, near and far, close friends and even new acquaintances, are in our corner.
Ron himself constantly amazes me. He had a good day today, relatively alert and pain free. He ate well (lasagna and homemade banana cream pie tonight – dropped off by a friend!) and was quite productive while I was at work. This also gives me hope. His spirit has been lifted by the prayers of one of my dear friends. She has such strong faith and he is radiating and sharing in that. It is nice to see him feeling so great, especially after so many bad, sad, dark, painful, awkward days in a row.
....some hope.
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