Tuesday, August 3, 2010

Not On Schedule

Nothing proceeds on schedule in this business. The last you heard, a date had been set for Brooke’s homecoming, August 17. But this date was, to say the least, optimistic, and didn’t include all the various obstacles that could rise up in the way.
Pain, oxygen needs, and atalectasis, for instance. Brooke’s had a couple of weeks of serious nerve pain building up, and the past week or so of ferocious pain. Lots of ways of controlling this pain been employed: repositioning, secretion-clearing, heavy drugs, and yesterday, being put back onto the ventilator. It isn’t clear what causes this sort of nerve pain, or spinal cord pain, and it isn’t clear at all what to do about it. Peggy’s seen some of this, and, believing it had been corrected, went off to a meeting in Singapore—five days, plus what was supposed to be a day’s travel at each end—but the friends and family who were here saw even more, what they (later) said was horrible. Horrible.
Back on the vent? Brooke’s been off the vent for almost two months now, on the pacer only, so to go back on the vent has seemed like a major setback. The ventilator, once a friend and source of lifesaving security, now a mechanical albatross, with its sighing, constant noise, its cumbersome hoses, its backwards push-in rather than suck-in breathing, the reverse of normal human respiration. At first we didn’t quite understand why Brooke would be put back on it, but it turned out to be an effort to determine if by any chance it’s the enhanced settings of the pacer that have been contributing to the pain.

So August 17 isn’t likely to be the come-home date. Just the same, it’s been a very useful stimulus for getting a lot of activity done, though we all assumed it would slip. But there’s a new smaller date to anticipate—within the next couple of weeks, Brooke will come home for a test night, one night---a 24-hour home stay, arriving at 9 in the morning, staying through the day, then sleeping overnight and going back to South Davis until he’s fully ready to come home. This means lots of things: getting the new ceiling lift system in place, making sure the bathroom modifications work, having adequate and well-training nursing staff around the clock, and so on. And friends of course. This is a dry run for everything—and, of course, that means that everything has to be in place.
But why not try this August 17 after all? That’s what we’re mentally aiming for now. And we realize that friends will be even more important, even if it’s just 24 hours. Several friends came from the east coast to help while Peggy was out of town, an absolutely remarkable mixture of stimulation and help in crisis circumstances, and we know friends will be immensely important in the future.
Especially if Peggy were away. When she left for the conference in Singapore Brooke’s pain seemed to be under control—otherwise she wouldn’t have left—but it swelled to terrible proportions while she was gone. Friends and family served another purpose here as well, protecting her from the worst of this news, but fate intervened in its curious ways as well: on the way back her flight was delayed and she and her friend and colleague L. F., serving as her traveling companion to hoist her suitcase into the overhead bins (it being so shortly after the hernia surgery)—missed a connection in Tokyo. The airline said there was only one booking that would get them back to Salt Lake by just one day late—take the evening flight into Honolulu, disembark, spend the day, and get back on the plane in the evening.
If somebody had asked Peggy if she could use a day’s vacation snorkeling in the coral reefs at Hanauma Bay, she would have said, you must be dreaming, and if you’d said it could include a lovely little supper at the beach at Waikiki, she’s have thought you were stark raving mad. But there it was, easing her anguish too. And by the time she got back, Brooke’s physician was pretty sure that the pacer wasn’t the cause of the nerve pain and Brooke was happily back to the pacer, his pain gone in any case.


Anonymous said...

I guess it's one of those situations where it's better not to know. I'm glad Brooke's better and Peggy had some much-needed relaxation.

Lorraine Seal said...

I'm sorry Brooke has endured so much pain. We can only guess at the frustration and disappointment this causes both you you. Even though I've been quiet, I continue to think of you and check the blog daily.

Here's hoping you'll be settled at home soon.


Steve Adams said...

Dear Brooke, I am sorry you have been in so much pain. I suppose it is "phantom" pain, which is, of course, just as real as "real" pain. I had shingles two years ago, which causes phantom pain, so I have an inkling of what you must be suffering. I spoke to Nick yesterday and he said it was hard to see you in so much travail. My love to you and Peggy. Steve (Adams)