Tuesday, August 22, 2006

Snips, snakes and more

Hi everyone:

By comparison with most other days, yesterday was a very good day for Patty. She felt very few waves of nausea and, other than fatigue, had few of the symptoms that have plagued most of her recent days and evenings. In the afternoon, we stopped briefly into Patty's school and went for a much-needed haircut. In the evening, our neighbor Mike Williams (left, with Patty) dropped in for a visit, and our nephew Scott Shepard arrived; he'll be visiting until Thursday.

In the afternoon, Patty had a conversation with Cathy Murks at UCH, who said that doctors from both UCH and Edward are now putting their heads together to determine the next best course of action for Patty. The feeling is that Patty can only go so long feeling sick almost every day, and a game plan needs to be formalized.

Last night, Patty and I agreed that we want to be active participants in that decision-making process, so we will be spending some time today crafting a letter outlining our concerns and expectations. For example, we are worried about how Patty will respond to post-transplant drugs, given her problems with tolerance of the meds so far. To be honest, we're uneasy with each of the possible courses of action, but want to know what provides the best odds of (a) living, and (b) living well.

Late yesterday afternoon, Patty was feeling a need to relax and I was feeling a need to spend some quality time with the kids -- so what better way to expand the minds behind our future than with...Snakes on a Plane. If you're expecting a good movie, you'll probably be disappointed. If you're okay every once in a while with something a little more campy, you won't feel you've wasted your money. The kids liked the flick, so...mission accomplished.

Let's fast-forward to today. Our beloved patient has returned to status quo -- fairly pronounced nausea, sore stomach and shakiness. I suspect our next entry won't be as full of activity.

Love,
Brian

P.S. Still waiting on the new PRA stats -- we've been told not to read too much into them, as they tend to be less dependable when taken immediately after an IVIG infusion, for some reason. Having said this, we'll share what we find out.

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