Sara is back in Seattle so I'm blogging from Brooke's bedside in the hospital (it's not at all unusual for him to see me typing away on my computer while he contemplates some interesting interior thought). The past couple of days have been tough--even though his lung problem is clearing up, the cumulative frustration of two weeks in which you can't move or speak is taking its toll. You can't control anything, and you can't make your wishes known. Even though he can formulate his thoughts and mouth them in what are obviously long, full sentences, we can't lip-read well enough to catch it all. Many of you who've been to see him know this, how difficult it is to have a conversation even despite the wonderful expressiveness of his eyes. I've had a long conversation today with the attending physician here in the SICU, and understand that the reason they're not yet able to put a speaking cap on the ventilator connection is that in using it one exhales fully, but you don't want to do this if there's still a lung problem and so risk lung collapse. Thus it may be awhile longer before he gets a speaking cap, but certainly something to look forward to. Brooke's also looking forward to moving--perhaps tomorrow--to the intermediate care unit here, a sort of transitional space between the critical-care ICU and his longer-term destination in the rehab unit. Moving is a sign of progress, long awaited.
Spending a couple of weeks hanging around an ICU invites the sort of rumination about what you'd change or fix if you could. Much is really quite wonderful here (if you have to be here at all)--for example, the nursing staff is terrific, humane, considerate. But here's my first suggestion: I'd try to make sure there's somebody around who can lip-read effectively--hiring somebody with a hearing impairment would be a good way to do that, regardless of what capacity they were hired in. I'm told that there aren't too many cases here in which somebody on a vent is also competent and alert--many still more unfortunate folks come in with severe head injuries--but it is very difficult to watch the frustration of someone who wants so badly to talk but can't use his hands to write, can't use his vocal chords to make sounds, and can't even gesticulate except with his eyes.
So these are tough times. But the good news is that he's more able to have visitors, and is generally brightened by seeing people. Many many apologies to those who've been turned away by the nursing staff over the past couple of days, or who came during the excluded hours (no visitors are allowed 7:00-8:30 am and again no visitors 7:00-8:30 pm; I don't know what the rules are in the intermediate unit). It's impossible to say from moment to moment just what his condition will be, but I think he's missing being able to see people and would welcome short, not-too-strenuous visits again, sometime over the next several days.