So here it is thanksgiving and finally got the internet working. FYI having a hospital bed in the livingroom makes interesting conversation piece.
Jeff will be discharged from home care next week. And we are supposed to ask the primary to refer him to outpatient physical therapy. he can't drive until he is off pain meds. Not sure what that means or when it will happen as he needs one now and then if he over does it
OK so bags are an issue, they are harder to find the "right one" than finding the perfect purse. (The women--girly ones Kay, no you--in our audiance will understand). This one stays on better but that one doesn't leak from the bottom. This one has a filter. it's so weird.
So ok the Ostomy nurse said we are doing better than we think. That's good, I guess. Not sure what it means. . . does it mean we are moving along better than expected, or the situation isn't as bad as it could be? Ya' know.
Ok trying to knit this: http://www.coolhunting.com/archives/2006/02/knitted_digesti.php
but have to use double pointed needles and temporary cast one. Ok way too complicated but trying, still.
So jeff wants to edit through this stuff and sort of --- is it pravda? Make it more accurate.
Remember I warned you all that this was as viewed through the eyes of the psycho bitch wife.
But Jeff can walk up the stairs now, not easily and not just sort of spur of the moment, but he can if we plan for it.
He went to some stores briefly.
He hasn't sprung a cartoon style leak in several days--- the fistula (the hartmann's pouch opening) is still draining so we may end up with a pouch there.
Joe asked today about the next surgeries. There are two more. One to form the J pouch, then one to remove the external stoma. The one to form the pouch is massive and several (6 to 8) week recovery, the 3rd is done 2 or 3 months later and takes 4 or so weeks to recover from.
Joe then wanted to know when jeff would be "sort of normal" and "by the time he's 50 then?"
Ok we don't know what the fuck is normal or sort of normal. We don't know when any of these surgeries are happening. He is no where near the point physically we can talk about it. The nurses said we are doing really really well and Kate had to note several times there is still an open wound in his belly. Ok, but it's smaller. Given where the fuck we started from we are doing well! And there is no time frame because we have no basis for comparison and the doctors aren't into crystal ball gazing. When he is more or less back to work and his kidney function is returned to normal and he has his endurance back they might start to think about when the next surgeries will be.
Sorry for some reason the "back to normal" question pissed me off. Then the response to my sort of "we don't know there are 3 more surgeries and recover time, so he said "by the time he's 50 then".
Why did that piss me off? It's like all sorts of people ask me how jeff is and when I say "A lot better" it's assumed that he is back at work and "normal" meaning no bag, no open wound and just whatever. It's like no it means he can walk to bathroom without being out of breath. It means he can walk to the car. It means he can take a shower.
And this desire to make better sort of "Ok so he's back at his starting point" frustrates me because it's hard to feel like the little progress we have made is being completely discounted.
Does that make any sense?
OH and FYI, he did not suffer brain damage. He can remember what people tell him, if he cares to or they make sense and make sure he is awake. He is able to make basic decisions and can engage his own care. I am not a moron nor am I so engaged in my job I can not do what needs to be done ie contact his doctor follow up with his after care. We are both capable of making decisions related to his "rehabilitation" without constant prompting and reminders from others who think we are not adults.
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Of course, the proper response to "When will Jeff be normal?" is really "When was he EVER normal?!"
ReplyDeleteBWAAAhahaha, I kill myself!
K
Consider the source. Abnormal people always thinks it is the other guy that is not normal!
ReplyDeleteA. Normalcy is a highly-overrated concept anyway.
ReplyDeleteB. Normalcy is a only a concept of being relative to any given state and time: I think you have now established a new normal for your family, given the impact of recent events on all of your lives, and it's going to be changing on an ongoing basis, especially with more surgeries in the offing. But it's all going in the right direction now, thankfully, and sometimes it takes a crisis to show us how strong and capable we really are. As Sanzo himself says, people who don't change are boring - sometimes life just forces the issue a little more than we would like.
C. Having said all that, I think you all are doing a f**king amazing job, and coping incredibly well with the huge number of tremendously difficult things you have been hit with in a very short time.
So to hell with anyone who isn't insightful enough to appreciate that, who vexes you with stupid questions, patronizes you, or treats either of you like idiots. You have both clearly demonstrated in the past month or so what strong, resourceful people you are (as in the ability to draw on inner resources as well as outer ones,) not to mention how strong your devotion to each other is. And with everything you've been through, if you didn't both have such a damn good grip on things, one or both of you would probably be dead by now. (And then I would be pissed. No more friends of mine are allowed to die in the next three years. I've declared a moratorium on death until 2012.)
Hang in there, my friends. Consider HG's law: Life is always in one of three states: Bleak, Blah, and Bliss. You've been through the Bleak, and are in the Blah now. There's bound to be some Bliss headed your way eventually - it's just the way of the Universe.
Personally, I just miss the two of you like hell and want to see you both. Just sauying.
ReplyDeleteCJ