The PICC was not safe to use anymore, and we have started discussing goals of care. The original hope with doing TPN (IV nutrition) was to give Mike's mouth and throat sores rest from irritation, time to heal, and ability to heal (no nutrition means no nutrients to aid healing). Since we haven't had those things occur in a reasonable time, we started discussing if he wanted to continue or if he wanted to focus on comfort and quality instead. For the past year he has said quality of life, and he confirmed it again this past week.
UPDATE: question was asked, "So he's not eating 'real' food and the PICC will not be replaced?" Answer: "He's 'eating' very little, taking fluids fairly well but only a few soft foods. Today (Sunday noon) he's had an egg, cup of milk, about 12 oz of a mixture banana-milk-ice.cream-protein.powder-breakfast.shake-mix, 1/4 c canned mandarins."
UPDATE: question was asked, "So he's not eating 'real' food and the PICC will not be replaced?" Answer: "He's 'eating' very little, taking fluids fairly well but only a few soft foods. Today (Sunday noon) he's had an egg, cup of milk, about 12 oz of a mixture banana-milk-ice.cream-protein.powder-breakfast.shake-mix, 1/4 c canned mandarins."
What would he like to do with his remaining time? Besides family and friends, he said national parks, fishing, and photography. We will be looking at more local, accessible day-trips.
Maybe dangle a worm from the wheelchair dock at St. Louis ponds (not too far from us). Probably not going to head to the Snake River and Hell's Canyon.
Plenty of state parks, and we have an annual day-use permit.
We've been very lucky to have lots of friends/family visit just this past week; Benz's, Erickson's, Leighty's, Ringsage, Hayley; and Mike's cousin Greg (and Chris) from the Spokane area. And we got to Skype with son/daughter-in-law/grandson. We got our own private violin concert from Ender. (If you know Scott, tease him about the technical difficulties being on his end.)
Please don't worry yourself and others by asking "What's wrong with him and why can't they fix it?" If you know him well enough, you know he's been in decline for some time, taking multiple hits from Parkinson Disease, arthritis, congestive heart failure, lymphoma. As for me, I'm lovin' this guy who is still "my knight in shining armor," the one I've sailed with so many times, planted gardens with, lived in four homes, RV'd with, had our combined five kids grow in the blink of an eye, over 27 years. He might say he's put up with my hooliganism. I have no idea what he's talking about.
Our love to you all. Keep thinking happy thoughts.
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