Sorry for the delay after the recent blog about pain: these days haven’t been easy. After a couple of days, pain returned in force, and that made some difficult choices about the tradeoffs between control of pain and maintaining normal cognitive function. He's said that it feels as if his whole body is on fire. For some days, he was doped up enough so that he couldn’t do much of anything at all; for some, he’d try to do the various forms of therapy, but as one of the therapists put it, even trying to get him to do hand exercises like moving his thumb, “you have to be in the same time zone.” (There are a lot of claims made in the end-of-life literature about how it is possible to control virtually all pain—they usually mean cancer pain—but up close, it doesn’t look so great.) In Brooke’s case, it’s been possible to back away from these forms of pain control at least for the moment, and as of this evening he’s comfortable and happy, and is able to say yes, he’ll be my valentine.
There’s lots of family here at the moment and more coming. Among them,
Sara is here (along with Max, who just turned 7) and says she is willing to bring back anyone’s bowls/Tupperware/baskets, etc….but we have no idea what belongs to whom. If you are attached to something, please let us know and she can make deliveries. Otherwise it may never get back to you!—or at least not until after Brooke is eventually home (though that may be some time away) and we can have a big open house.
Meanwhile (now Sara is writing this), Brooke is adjusting to the fact that there’s a lot more rehab work to do before he can think about coming home, and that may involve transfer to a long-term skilled nursing facility known as South Davis, the place of choice considering the insurance alternatives. If this happens, it will probably be more important than ever that his support follow him to South Davis—it seems far away but it’s actually only 20 minutes, just off the 5th South exit in Bountiful. He understands that the investment in time, vent-weaning, and other therapies will stand him well in terms of coming home, but he also fears the isolation that going to a different and strange facility presents.
We don’t know yet whether this will have to happen, or whether he’ll stay longer at the U, or what, but like everything else, if it does, we’ll try to make the absolute best of it. In any case there’s been progress on the vent-weaning front. The other day he spent (by his own count) 15 hours and 45 minutes just on pressure support—that means, initiating his own breaths but having the vent just goose up the amount of air coming in a bit. Then he spent a couple of short periods without any vent help at all. He was thrilled! But then the pain episodes intervened and made further trials impossible, though now that the pain isn’t occurring at the moment we’re back to optimism mode. And, today, being each other’s valentine.