Friday, April 30, 2010
post surgery 2
It took almost 6 hours but he came through well. Jeff is currently in St. Joes with IV liquids and 2 drains. The best part to his mind is that he has an epidural so he is in much much less pain. He walked today and has ice chips.
Saturday, April 17, 2010
update, really late
OK, so I haven’t posted in a long long time. Mostly because we are trying to catch up, just in time to have him go back in. Surgery 2 is scheduled for 4/29/10. He will arrive at freaking early AM and have his Jpouch made. This is a very simple explanation. http://ibdcrohns.about.com/od/ulcerativecolitis/a/jpouch.htm. He is having the 3-part surgery, partly, I firmly believe, because we allowed the scary ‘sub hobo with a cardboard box’ hospital to treat him first and they sort of weakened him.
Post surgery he should come home in 4 to 5 days and be able to use the stairs so I won’t have the opportunity to harass the discharge planner who can’t get hospital beds for patients.
I have thought about becoming a freelance case manager for people, hire me for 25 bucks an hour and I will find out what you can and cannot get.
Back to what is important; he will be back at work in 4 to 5 weeks and have surgery 3 in 3 months (just in time for my birthday?).
He will not be in the new tower for surgery 2 but will for surgery 3. If you don’t know what I mean. Don’t worry too much. They are building a new tower of patient rooms and will tear down the old one.
Yes, I did get a couple of days in the hospital. Appendix. How really BORING.
So Jeff has done really freaking well, he has had every single annoying complication of this surgery he could that is messy but not dangerous. They talked about blockages and all sorts of things. He got weird mucus discharge that made the bags hard to keep on, and we had to go to battle, but the insurance people are wonderful and helped. So now we have better wafers. (the little round bit that attaches to his skin and we hook the bag on). He also has drainage from his incision because the Heartman pouch is draining there. (messy but far better than other choices). But really it’s not scary. Not sure how awful it is for him to deal with but I have no real freak-out about it. Not like if he was getting infections, or blockages or other things that required aggressive treatment.
I do think he has Bad Hospital PTSD. He said he went in there for a review (still has a Bad Hospital primary) and got really angry.
So on the 29th I start of leave from work for 7 days and possible another 1 or 2 weeks part time. We, Cori, Jacque, Kate (Jeff’s mom), we be in the surgical waiting room. The kids are not willing to hang out in school “waiting”.
I will not be on the cell phone that day. I may have a phone minder and I will post on face book, or designate someone.
For the Dr. Who fans, Bad Hospital is much worse than Bad Wolf.
Updates will be forth coming.
Post surgery he should come home in 4 to 5 days and be able to use the stairs so I won’t have the opportunity to harass the discharge planner who can’t get hospital beds for patients.
I have thought about becoming a freelance case manager for people, hire me for 25 bucks an hour and I will find out what you can and cannot get.
Back to what is important; he will be back at work in 4 to 5 weeks and have surgery 3 in 3 months (just in time for my birthday?).
He will not be in the new tower for surgery 2 but will for surgery 3. If you don’t know what I mean. Don’t worry too much. They are building a new tower of patient rooms and will tear down the old one.
Yes, I did get a couple of days in the hospital. Appendix. How really BORING.
So Jeff has done really freaking well, he has had every single annoying complication of this surgery he could that is messy but not dangerous. They talked about blockages and all sorts of things. He got weird mucus discharge that made the bags hard to keep on, and we had to go to battle, but the insurance people are wonderful and helped. So now we have better wafers. (the little round bit that attaches to his skin and we hook the bag on). He also has drainage from his incision because the Heartman pouch is draining there. (messy but far better than other choices). But really it’s not scary. Not sure how awful it is for him to deal with but I have no real freak-out about it. Not like if he was getting infections, or blockages or other things that required aggressive treatment.
I do think he has Bad Hospital PTSD. He said he went in there for a review (still has a Bad Hospital primary) and got really angry.
So on the 29th I start of leave from work for 7 days and possible another 1 or 2 weeks part time. We, Cori, Jacque, Kate (Jeff’s mom), we be in the surgical waiting room. The kids are not willing to hang out in school “waiting”.
I will not be on the cell phone that day. I may have a phone minder and I will post on face book, or designate someone.
For the Dr. Who fans, Bad Hospital is much worse than Bad Wolf.
Updates will be forth coming.
Thursday, December 17, 2009
today
OK haven't posted in while.
Jeff is doing better and needs me less. Sort of sullies my reputation as indispensible. I feel threatened by that. I like being a hero.
So from the outside he is doing better but he's frustrated by the limitation of his being weak and still easily tired. He is also having tons of back pain.
He is supposed to go back to work on 12/20. Yea.
We see the surgeon again in February, he will look to do the second surgery in Aprilish (6 months).
the surgeon is very positive.
So I am back at work full time after the first of the year.
And cori finishes part one of drivers ed and will have her learners permit.
Party anyone? I'd like to have a low stress party soon to sort of celebrate we are all here in 2010.
so hang in there there will be updates. Jeff is working on his view of things and beware; he was obviously living a different life than I was for a lot of it becasue we have different memories. But that makes it fun, right?????
Jeff is doing better and needs me less. Sort of sullies my reputation as indispensible. I feel threatened by that. I like being a hero.
So from the outside he is doing better but he's frustrated by the limitation of his being weak and still easily tired. He is also having tons of back pain.
He is supposed to go back to work on 12/20. Yea.
We see the surgeon again in February, he will look to do the second surgery in Aprilish (6 months).
the surgeon is very positive.
So I am back at work full time after the first of the year.
And cori finishes part one of drivers ed and will have her learners permit.
Party anyone? I'd like to have a low stress party soon to sort of celebrate we are all here in 2010.
so hang in there there will be updates. Jeff is working on his view of things and beware; he was obviously living a different life than I was for a lot of it becasue we have different memories. But that makes it fun, right?????
Thursday, November 26, 2009
Thanksgiving
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.
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.
Wednesday, November 18, 2009
so more information
We met with the surgeon today.
He said: the crazy dig in the wound and rip open the healing that nurse from home care does is not ok. He actually wrote a "don't dig around in the damn wound" prescriptions. Not in those words, but close.
The ostomy nurse helped us sort out what system to use. They also said they were calling the home care agency. Funny we got customer satisfaction survery call 4 hours after we left that doctor's appointment. How likely is that to be a coincidence???
He is really really nice. Kept sort of apologizing for all the inconvenience of him having fluid draining and the open wound. We weren't upset about that we were upset about the way he sat in the ER for an hour and wasn't seen. Whether it's true or not he also said he has had patients call from the ER who are upset.
So tomorrow we see the kidney guy.
As far as the fluid in his belling they are saying it will take a long time to get rid of it. It took a long time to get like that. It was caused by the lose of protien and was going on back 10/8 and that is part of why jeff was so sick after the surgery.
So here we are, waiting again.
He said: the crazy dig in the wound and rip open the healing that nurse from home care does is not ok. He actually wrote a "don't dig around in the damn wound" prescriptions. Not in those words, but close.
The ostomy nurse helped us sort out what system to use. They also said they were calling the home care agency. Funny we got customer satisfaction survery call 4 hours after we left that doctor's appointment. How likely is that to be a coincidence???
He is really really nice. Kept sort of apologizing for all the inconvenience of him having fluid draining and the open wound. We weren't upset about that we were upset about the way he sat in the ER for an hour and wasn't seen. Whether it's true or not he also said he has had patients call from the ER who are upset.
So tomorrow we see the kidney guy.
As far as the fluid in his belling they are saying it will take a long time to get rid of it. It took a long time to get like that. It was caused by the lose of protien and was going on back 10/8 and that is part of why jeff was so sick after the surgery.
So here we are, waiting again.
Monday, November 16, 2009
And more of the same
OK, so my mother in law never got told I had to work today so I didn't go in, well fraak me.
Ben brought us a zillion movies but they only play on computer. Need to figure out how to work that.
Jeff having a bad morning. He's stressed and tired and had a small eruption. can't figure out what he wants to eat and the doctor's office puts me in voice mail "for my convenience."
So how is everyone else? I did go out saturday, with Laura and my kids we went and got my car.
So about the all nighter, plans anyone?
So let me know what is going on in the world out there.
Ben brought us a zillion movies but they only play on computer. Need to figure out how to work that.
Jeff having a bad morning. He's stressed and tired and had a small eruption. can't figure out what he wants to eat and the doctor's office puts me in voice mail "for my convenience."
So how is everyone else? I did go out saturday, with Laura and my kids we went and got my car.
So about the all nighter, plans anyone?
So let me know what is going on in the world out there.
Thursday, November 12, 2009
ummm
OK, so is jeff regressing? I got home and his mom told me "he ate 2 or 3 times and he's been drinking good and he took a nap in the bed."
What is it about patients that they become either not there or we. As in "have we had lunch yet?" or we talk about them like they are deaf and dumb. It's weird. And I can't imagine being the person that is happening to.
So tomorrow is friday the 13th.
How many pounds of fluid this time.
Ooooooo people do those baby lottery things. Should we all guess when jeff will next erupt and how much? Like 11/22 6 blue pads worth?
What is it about patients that they become either not there or we. As in "have we had lunch yet?" or we talk about them like they are deaf and dumb. It's weird. And I can't imagine being the person that is happening to.
So tomorrow is friday the 13th.
How many pounds of fluid this time.
Ooooooo people do those baby lottery things. Should we all guess when jeff will next erupt and how much? Like 11/22 6 blue pads worth?
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