I slept in this morning, then got up and checked my e-mail. There was one from Jim saying how happy he was that it was Monday and he's going for his cortisone shot today...just waiting now for someone to pick him up for that. I called him and had to break the news to him that it's only Saturday and he's got to get through the weekend first. He's been here so long he's losing track of time.
So then I spoke to my father-in-law and told him that I hope they didn't plow my truck in, because all I have is an ice scraper. He's telling me, no they wouldn't plow your truck in because they turn the plow when they get to the cars and I used to do snow plowing in the winter and they'd never do that, blah blah blah. Well, guess what...I go outside and sure enough....they plowed my truck in. And this snow was about 6 inches with 2 inches of ice on the top, so it's like solid rock. There's a guy parked next to me in a little sub compact struggling to get out. He was using a snow shovel that he got from the front of the hotel. When he finally made it I asked if I could use the shovel next. He says to me, Oh- you've got a 4 X 4- you can just drive right though this. I tell him, no- I bought the cheap Durango that's just two wheel drive. But luckily the drive train is in the rear. So it takes me about an hour to get the ice off the roof...the last thing I need is all that to come crashing down onto the windshield while I'm driving. I was picking it off in big two-foot long chunks. Then I had to work on the big pile of ice behind the truck. Luckily I didn't have to get rid of all of it. I was able to rock myself back and forth and break through it and get out, but I am so not used to driving this thing, and there were vehicles behind me so I'm petrified. I'm used to a little Neon. Although after five weeks of maneuvering Lahey's parking garage with it I'm getting pretty good. But I can still only pull into a parking space going toward the left. I can't judge the width of the thing very well.
Finally at 12:30 I make it to the hospital. Jim was sitting up in bed using his laptop, and he pointed to a sign he made that he stuck to his bulletin board. It says "Today Is" and a list of dates, including the month. He had "Jimmy comes" next to Sunday. He was spending a lot of time gagging. I'm not sure if it's still from the pnemonia that he's not entirely rid of or if it's from the feeding tube being uncomfortable. But it makes his mouth hurt when he gags, so he talked the nurse into some morphine and fell asleep. I wound up falling asleep in the big chair for three hours right with him. I vaguely remember a nurse coming in to check on him. Then I went back to the hotel to have some dinner, and came back again in the evening.
I've been having to spend a lot of energy trying to keep him encourged...we're almost done...this is the home stretch...you're almost out of here. I keep reminding him of how the surgeon in NJ, before deciding that he didn;t have enough experience with Jim's problem to do his surgery, had told him that he had a 40 percent chance of stroke...if he even survived the surgery at all. And I kept reminding him that even the doctors HERE had given him a laundry list of things that they thought he'd walk away with as permanent injuries, and all he has is this little larynx problem. You're going to beat this, and you're coming home soon. So keep those e-mails coming to him because now that he's getting healthier he's getting more depressed and agitated. His personal e-mail is jimp1102@comcast.net.
Saturday, March 17, 2007
Friday, March 16, 2007
Friday March 16, 2007 11:24 PM
Ooops...forgot to mention something. If you believe in freaky shit this will make you say "Oh my God..." and if you don't it might make you a believer. Remember how I said that Jim was so insistent that Lauren Tait came to visit him and I chalked it up to morphine and the fact that Jim's nurse resembled her somewhat? I left Lauren a voicemail this morning about it just so she could have a good laugh, and guess what....she called me back all freaked out because she dreampt that she went to Boston to visit Jim in the hopital. Now how weird is that?
Friday March 16, 2007 8:33 PM
So this week ended the exact opposite of last week. It started out bad because Jim accidentally pulled out his feeding tube during the night and had to have it re-inserted. I called him today and he said they were going to send him for a swallowing test. I had a tough working day today because I had a site down in the a.m., and then Miele closed early because of the icy conditions back home. It's been snowing really bad up here- they're expecting up to 10 inches overnight.
So after Miele closed at 3 I went out in the snow to the hospital, and there was Jim, sitting with his feeding tube again. But he had great news. The ENT department decided not to send him for another swallow test today. Instead, on Monday they're going to inject cortisone onto the side of the larynx that won't move so that the normal side can close against it, and there's a possibility that he may get out of here next week! The female ENT came in while I was there and I asked her how succesful the cortisone was in these cases, and she said very successful. Jim will have to continue to take medicine for the staph infection, but he can take pills for it after he leaves. As long as he doesn't spike any fevers they won't keep him hospitalized for that. I don't know why they didn't come up with this idea sooner...maybe because he was so sick, but he's getting better.
I felt so bad for him before they got the food hooked up to the feeding tube. Apparently until they get something pumping DOWN the thing you're very uncomfortable and sometimes you cough UP bile, which was what was happening to him. But they got him comfortable by 7 pm so I left for the night. The weather is bad here, and I didn't want to chance that it turns to sleet. His spirits are up, though, because he can now see the light at the end of the tunnel.
And Mom, Joe, Nick, Judy, and Jimmy are coming up on Sunday to spend a few hours with him, so at least Jimmy will be able to see his Dad.
I'm feeling so much happier too because I can't wait to go home. I'm also thinking that maybe I should learn the Heimlich Maneuver. If Jim is always going to be at risk of aspirating his food, maybe it would be a good idea if I learned that so I could keep him from choking in case God forbid something happened.
So after Miele closed at 3 I went out in the snow to the hospital, and there was Jim, sitting with his feeding tube again. But he had great news. The ENT department decided not to send him for another swallow test today. Instead, on Monday they're going to inject cortisone onto the side of the larynx that won't move so that the normal side can close against it, and there's a possibility that he may get out of here next week! The female ENT came in while I was there and I asked her how succesful the cortisone was in these cases, and she said very successful. Jim will have to continue to take medicine for the staph infection, but he can take pills for it after he leaves. As long as he doesn't spike any fevers they won't keep him hospitalized for that. I don't know why they didn't come up with this idea sooner...maybe because he was so sick, but he's getting better.
I felt so bad for him before they got the food hooked up to the feeding tube. Apparently until they get something pumping DOWN the thing you're very uncomfortable and sometimes you cough UP bile, which was what was happening to him. But they got him comfortable by 7 pm so I left for the night. The weather is bad here, and I didn't want to chance that it turns to sleet. His spirits are up, though, because he can now see the light at the end of the tunnel.
And Mom, Joe, Nick, Judy, and Jimmy are coming up on Sunday to spend a few hours with him, so at least Jimmy will be able to see his Dad.
I'm feeling so much happier too because I can't wait to go home. I'm also thinking that maybe I should learn the Heimlich Maneuver. If Jim is always going to be at risk of aspirating his food, maybe it would be a good idea if I learned that so I could keep him from choking in case God forbid something happened.
Thursday, March 15, 2007
Thursday March 15, 2007 9:23 PM
I called Jim early this morning to check on him. His voice sounds a little stronger than yesterday, and each day that goes by he's coughing up less and less crap. But I heard an interesting story from his nurse tonight. They give him some Ambien at night to help him sleep because there's some crazy screamers in this ward. But at around 3 or 4 a.m. his nurse sees him sitting on the edge of his bed using his morphine pump, and he asks her, "Am I still at Lahey?" Then this morning when I called him he tells me, "There's a bunch of Miele people here to see me." I'm thinking, that couldn't be. If anyone from Miele decided to come up I know they'd call me first, but then Jim tells me, "Yeah- I just saw Lauren Tate in the hallway with the nurse." Are you sure, I ask him. But he was so insistent. I called Werner and asked him if by any chance he heard anything about Lauren coming up here, and he said no. I figured out what it was, though. His night nurse looks a lot like Lauren Tate. He must have seen her in the hallway. The nurse told me it's the morphine that makes you loopy like that. But by tonight they had him completely weaned off that stuff. His hearing seems to be improving, too.
So every day he gets a little better and a little better. He was up tonight looking at his new scars in the mirror. His face looks completely normal except for a slight swelling where he still has staples. He accidentally pulled three of the staples out scratching because he thought they were dried blood, but nothing spurted out of him so I guess that's o.k. I saw the infectious disease guy today and he said they're going to draw some more labs on him in the morning because they haven't done that in awhile. I can never remember the infectious disease guy's name so I just call him Bill Nye the Science Guy. But everyone likes the look of Jim so far.
Jim asked for his laptop again so since they're predicting 10 inches of snow here tomorrow and I don't know for sure I'll be able to get to the hospital I went ahead and brought it to him. I hid it in his closet so it doesn't look so obvious that it's there, and Jim is pretty mobile now so he can go get it himself.
And you know I've been here way too long when I know how to program the medication pumps myself. The pump for Jim's feeding tube kept ringing alarms like it was blocked. So I've already got the knack for trying to turn it to "Hold" and then "Feed", back and forth, to see if the alarm clears. Then two nurses and I were trying to figure it out. Maybe this batch of chocolate goop is extra thick? Maybe it's the tubing? Did you prime the pump first? Maybe we should try adding some water to it? They decided to get a new pump. This will be Jim's third pump. Every day they have to bring a new one because they aren't acting right. Well, what do you want...they're made by G.E. Ha ha ha. The longest they've gotten one to work has been 12 hours. In the meantime I took the volume of the feed down to see if that would help...I figured hell, the thing's acting loopy...I can't make it any worse. And if that doesn't work I know how to reprogram it. But a new one was on it's way when I left tonight.
I also keep encouraging Jim to use his little breathing contraption they left for him. It's kind of like a peak flow meter for people with asthma, and if you've every had surgery they probably gave you one. It's supposed to help you get the secretions out of your lungs. I had a year of vocal chord therapy when my voice went bad, though, so I know another function of those things is to excercise your larynx. It's kind of like stretching your muscles before you run. As you use the thing you can feel your vocal chords stretch out and then relax so it really helps you regain strength in that area.
I extended my hotel stay one more week. If everything keeps going like it's going I think there's a good chance he might get out of here by then. We won't know for sure until he passes a swallowing test, which they probably won't give him until Monday. They wanted him to heal a little more before they tried again.
So every day he gets a little better and a little better. He was up tonight looking at his new scars in the mirror. His face looks completely normal except for a slight swelling where he still has staples. He accidentally pulled three of the staples out scratching because he thought they were dried blood, but nothing spurted out of him so I guess that's o.k. I saw the infectious disease guy today and he said they're going to draw some more labs on him in the morning because they haven't done that in awhile. I can never remember the infectious disease guy's name so I just call him Bill Nye the Science Guy. But everyone likes the look of Jim so far.
Jim asked for his laptop again so since they're predicting 10 inches of snow here tomorrow and I don't know for sure I'll be able to get to the hospital I went ahead and brought it to him. I hid it in his closet so it doesn't look so obvious that it's there, and Jim is pretty mobile now so he can go get it himself.
And you know I've been here way too long when I know how to program the medication pumps myself. The pump for Jim's feeding tube kept ringing alarms like it was blocked. So I've already got the knack for trying to turn it to "Hold" and then "Feed", back and forth, to see if the alarm clears. Then two nurses and I were trying to figure it out. Maybe this batch of chocolate goop is extra thick? Maybe it's the tubing? Did you prime the pump first? Maybe we should try adding some water to it? They decided to get a new pump. This will be Jim's third pump. Every day they have to bring a new one because they aren't acting right. Well, what do you want...they're made by G.E. Ha ha ha. The longest they've gotten one to work has been 12 hours. In the meantime I took the volume of the feed down to see if that would help...I figured hell, the thing's acting loopy...I can't make it any worse. And if that doesn't work I know how to reprogram it. But a new one was on it's way when I left tonight.
I also keep encouraging Jim to use his little breathing contraption they left for him. It's kind of like a peak flow meter for people with asthma, and if you've every had surgery they probably gave you one. It's supposed to help you get the secretions out of your lungs. I had a year of vocal chord therapy when my voice went bad, though, so I know another function of those things is to excercise your larynx. It's kind of like stretching your muscles before you run. As you use the thing you can feel your vocal chords stretch out and then relax so it really helps you regain strength in that area.
I extended my hotel stay one more week. If everything keeps going like it's going I think there's a good chance he might get out of here by then. We won't know for sure until he passes a swallowing test, which they probably won't give him until Monday. They wanted him to heal a little more before they tried again.
Wednesday, March 14, 2007
Wednesday March 14, 2007 10:20 PM
Today I called Jim's doctor because Jim seems to have trouble hearing. I called Jim last night three times and he didn't pick up. Then I called the nurse to check if maybe he was sleeping, but she said, no- he's wide awake watching t.v. Finally he picked up the phone. He's telling me he can't hear it ring. I had also been noticing that after this last surgery he's not hearing ME well either when I talk to him, and as you all know, I'm not a quiet woman. I'm trying to be quiet here in the hospital so I don't disturb people, but my quiet is still loud to everyone else. So I guess Dr. Dolan finally took me seriously because I decided to see Jim for a quick visit in the a.m. since he was so depressed yesterday, and when I get there they're in the process of taking him down to the ENT's office for a hearing test, and they asked if I could help push him so they didn't have to call for an aide. Sure, no problem. It turns out he DOES have some hearing loss in the left ear only, but that's due to fluid from the pneumonia, so it should clear. I get him back to his room and put the phone on his RIGHT side. He was still very depressed. And I notice that he keeps using the morphine pump. I asked him what hurts. "Nothing", he says, but he's using the pump anyway. Well, he can't keep doing that because he's going to become a junkie. Oh, and by the way...they're so worried about his staph infection that they wheeled him through the hallway and down to his hearing test with no gown on and no gloves.
I called the social worker when I got back to the room to ask if maybe she can get a psych consult in there for him again, and I told her about him abusing his morphine.
This afternoon Jim's nurse scared the living piss out of me. I call to see how he's doing and she says he just got back from a neck x-ray and Jim says it "wasn't good". Now I'm in a panic...."What do you mean it wasn't good? Who ordered it?" But she knows nothing. So I paged Dr. Tannas. He's just as perplexed. He didn;t order any x-ray, and if they wanted to look at his neck they wouldn;t do an x-ray anyway- they'd do a cat scan. He says he's going to call the nurse and find out who placed the order and what it was all about. In the meantime I get Jim on the phone. Here's the REAL story: Last Thursday when they brought in the oral surgeon they tried to do a panoramic x-ray of Jim's teeth, but the machine was broken and as it spun around it kept hitting him in the head. They'd tell him to "Stay still" and then whack...the thing would come around and hit him, so they never got any good x-rays, which is why the oral surgeon was going to try to get the originals from NJ. Apparently they got the machine fixed now and sent him for a repeat of THAT x-ray. And of course that x-ray would never be good. Anything involving Jim's teeth would not be good. So Dr. Tannas found this out around the same time I did and called me back, and we both breathed a sigh of relief. Jim's neck was so good today they removed the drain.
Then tonight I went to a local spa for a massage. I've never had one of those before. It was nice, but GOD did they use a lot of oil on me. The whole time I'm lying there trying to relax and thinking, Jesus lady...just how greasy am I going to BE after this thing is over? And I found out about 1/2 hour after I left that I'm allergic to the oil they used because I started itching like crazy. I've got to hop in the tub after I write this.
So I went to see Jim after the massage, loaded with my oil, even in between my toes...I squish when I walk...and he seemed in better spirits. He was checking his e-mail, and he wants to see the pic of his tumor so I got him onto this blog...he's never read it. But I guess the doctor found out from the social worker about the morphine thing and they're going to start weaning him off of it starting tomorrow. Of course Jim tells me, "I'll get off morphine when you quit smoking," and naturally I tell him to shut up.
Now for an interesting observation. I usually have a very good nose. I can't hear for shit or see for shit or walk and chew gum at the same time, but I've always had a good sniffer. Remember how I've said in this blog before that Jim stunk? He stunk in his first room after surgery number one, and he stunk in his second room after surgery number two. These rooms were in different wings of the hospital, so you can't blame it on the room. I thought it was because Jim wasn't bathing or brushing his teeth. There was always a heavy, strange odor when you walked in to his room. In fact, I warned Tawanda about it last week before she saw him. I don't know if she noticed it or not. But you know what? That odor is gone, and Jim's not bathing any differently- hell, he's probably worse because he hasn't had a proper bath for over a month- and he still can't brush his teeth. I'll bet that what I was smelling was the infection in his neck. I'm not picking up that smell at all now. And I sat right next to him on the bed tonight...no smell.
So now we just wait for the healing to kick in, and I'm certain that by next week or therabouts he can pass a swallowing test, and then we'll get the hell out of here!
I called the social worker when I got back to the room to ask if maybe she can get a psych consult in there for him again, and I told her about him abusing his morphine.
This afternoon Jim's nurse scared the living piss out of me. I call to see how he's doing and she says he just got back from a neck x-ray and Jim says it "wasn't good". Now I'm in a panic...."What do you mean it wasn't good? Who ordered it?" But she knows nothing. So I paged Dr. Tannas. He's just as perplexed. He didn;t order any x-ray, and if they wanted to look at his neck they wouldn;t do an x-ray anyway- they'd do a cat scan. He says he's going to call the nurse and find out who placed the order and what it was all about. In the meantime I get Jim on the phone. Here's the REAL story: Last Thursday when they brought in the oral surgeon they tried to do a panoramic x-ray of Jim's teeth, but the machine was broken and as it spun around it kept hitting him in the head. They'd tell him to "Stay still" and then whack...the thing would come around and hit him, so they never got any good x-rays, which is why the oral surgeon was going to try to get the originals from NJ. Apparently they got the machine fixed now and sent him for a repeat of THAT x-ray. And of course that x-ray would never be good. Anything involving Jim's teeth would not be good. So Dr. Tannas found this out around the same time I did and called me back, and we both breathed a sigh of relief. Jim's neck was so good today they removed the drain.
Then tonight I went to a local spa for a massage. I've never had one of those before. It was nice, but GOD did they use a lot of oil on me. The whole time I'm lying there trying to relax and thinking, Jesus lady...just how greasy am I going to BE after this thing is over? And I found out about 1/2 hour after I left that I'm allergic to the oil they used because I started itching like crazy. I've got to hop in the tub after I write this.
So I went to see Jim after the massage, loaded with my oil, even in between my toes...I squish when I walk...and he seemed in better spirits. He was checking his e-mail, and he wants to see the pic of his tumor so I got him onto this blog...he's never read it. But I guess the doctor found out from the social worker about the morphine thing and they're going to start weaning him off of it starting tomorrow. Of course Jim tells me, "I'll get off morphine when you quit smoking," and naturally I tell him to shut up.
Now for an interesting observation. I usually have a very good nose. I can't hear for shit or see for shit or walk and chew gum at the same time, but I've always had a good sniffer. Remember how I've said in this blog before that Jim stunk? He stunk in his first room after surgery number one, and he stunk in his second room after surgery number two. These rooms were in different wings of the hospital, so you can't blame it on the room. I thought it was because Jim wasn't bathing or brushing his teeth. There was always a heavy, strange odor when you walked in to his room. In fact, I warned Tawanda about it last week before she saw him. I don't know if she noticed it or not. But you know what? That odor is gone, and Jim's not bathing any differently- hell, he's probably worse because he hasn't had a proper bath for over a month- and he still can't brush his teeth. I'll bet that what I was smelling was the infection in his neck. I'm not picking up that smell at all now. And I sat right next to him on the bed tonight...no smell.
So now we just wait for the healing to kick in, and I'm certain that by next week or therabouts he can pass a swallowing test, and then we'll get the hell out of here!
Tuesday, March 13, 2007
Tuesday March 13, 2007 8:56 PM
Damn...this is the 30th post entry. You know what that means. I'VE BEEN HERE WAY TOO LONG!
I called Jim's nurse in the ICU late last night to check in on him. They were moving him at midnight up to a regular ward- the same ward as last time- 7 West. Not 6 Southeast where they let him bleed out of his mouth for 10 minutes. I had a shrink appointment at 9 a.m. and figured I'd go look for Jim after that. I get a call from Bryan around 8:30 that Jim left him a voicemail at 5:30 a.m. Then Jim must have realized it was 5:30 a.m. and of course, no one's at work yet! So while I'm sitting with the shrink my cell phone goes off, and it's Jim. "Where's my laptop?" I tell him, back at the hotel. I'm not bringing an expensive laptop to the hospital where someone can steal it. "I want to get some work done" he says. I tell him he's crazy...I'll come find him when I'm done. Plus he's still got morphine in his system so God only knows how he'd be answering his e-mail. So I stopped by quickly in the a.m., introduced myself to the nurse, checked that he looked good and was comfortable, then went back to the hotel to get some work done. He's still under contact restrictions because of the staph so you have to grab a yellow gown from a shelf in front of his room to go in.
I went back late in the afternoon and apparently he flunked his swallowing test again, so the feeding tube was going to go back in. He was so depressed about that. I kept telling him, "Look- you passed one swallowing test, you'll pass another one. You just have to heal from the last surgery." The social worker came in, too, but there was nothing you could say to make the guy feel better. The infectious disease doctor came in and checked him out. He liked what he saw. Then came the otolaryngologist, or ENT (eye, ear, nose and throat) like they call them around Lahey. This ENT is a woman that I've spoken to many times but still can't remember her name. I was there when they put the tube in. Let me tell you, I hope whatever sadistic sick pup that ever invented that torture device had to have one at some point in his life- he (or maybe she) deserves it. I couldn't watch, but it was horrific listening to. It made the poor guy choke and gag and he was in a lot of pain afterwards. I got the nurse to give him a sedative when it was done to make him more comfortable. Then they have to get X-ray to your room and make sure it's in the right place. Turns out the nurse had to push it a little further down...thank God he was sedated for that. Once it's in right they can pull the wire out of the thing so the tube is softer and "more comfortable". I can't imagine anything making that tube more comfortable.
But he's just got to get better from the pneumonia and his larynx has to heal some more and then we'll try again in a few days. In the meantime, without that chocolate-flavored crap going into his stomach- he won't have any strength.
While the ENT was there I asked her if she liked the look of Jim's neck...is everything o.k.? She says, "Why- does something not look right to you?" and I tell her, "It looks o.k. to ME, but it looked o.k. to me LAST week, too. I'm asking YOU." So she says it looks like it's healing well and she's going to have a different kind of drain put into Jim's neck tomorrow. They keep a drain in that they flush every day to make sure there's no infection building up in the space. So the poor guy's got a drain stikcing out of his neck that he keeps in his hospital gown pocket, i.v.'s all over the place, and a big tube up his nose and down his stomach. At least they took the catheter out again so he can get up and go to the bathroom himself.
Now onto something a little amusing: You know how I've said that Jim's under "Contact Restrictions" because of his staph infection? Well, apparently this morning no one looked at his chart and they took him through a walk around the ward...all up and down the hallway. And his nurse in the afternoon wasn't even putting a gown on when she came in the room. So much for THAT, right? And you wonder why these things run all through hospitals.
I was able to get the scans on Jim's tumor on CD. I've posted a REAL-LIFE picture of his tumor pre-surgery on this blog. It looks like a cartoon, but I assure you, it's real. You can see the main carotid artery at the bottom and then it splits into the inner and outer carotid (one feeds blood to your brain, and one feeds it to your face). You can't even SEE the inner and outer arteries because the tumor was so entrenched around the thing.
I called Jim's nurse in the ICU late last night to check in on him. They were moving him at midnight up to a regular ward- the same ward as last time- 7 West. Not 6 Southeast where they let him bleed out of his mouth for 10 minutes. I had a shrink appointment at 9 a.m. and figured I'd go look for Jim after that. I get a call from Bryan around 8:30 that Jim left him a voicemail at 5:30 a.m. Then Jim must have realized it was 5:30 a.m. and of course, no one's at work yet! So while I'm sitting with the shrink my cell phone goes off, and it's Jim. "Where's my laptop?" I tell him, back at the hotel. I'm not bringing an expensive laptop to the hospital where someone can steal it. "I want to get some work done" he says. I tell him he's crazy...I'll come find him when I'm done. Plus he's still got morphine in his system so God only knows how he'd be answering his e-mail. So I stopped by quickly in the a.m., introduced myself to the nurse, checked that he looked good and was comfortable, then went back to the hotel to get some work done. He's still under contact restrictions because of the staph so you have to grab a yellow gown from a shelf in front of his room to go in.
I went back late in the afternoon and apparently he flunked his swallowing test again, so the feeding tube was going to go back in. He was so depressed about that. I kept telling him, "Look- you passed one swallowing test, you'll pass another one. You just have to heal from the last surgery." The social worker came in, too, but there was nothing you could say to make the guy feel better. The infectious disease doctor came in and checked him out. He liked what he saw. Then came the otolaryngologist, or ENT (eye, ear, nose and throat) like they call them around Lahey. This ENT is a woman that I've spoken to many times but still can't remember her name. I was there when they put the tube in. Let me tell you, I hope whatever sadistic sick pup that ever invented that torture device had to have one at some point in his life- he (or maybe she) deserves it. I couldn't watch, but it was horrific listening to. It made the poor guy choke and gag and he was in a lot of pain afterwards. I got the nurse to give him a sedative when it was done to make him more comfortable. Then they have to get X-ray to your room and make sure it's in the right place. Turns out the nurse had to push it a little further down...thank God he was sedated for that. Once it's in right they can pull the wire out of the thing so the tube is softer and "more comfortable". I can't imagine anything making that tube more comfortable.
But he's just got to get better from the pneumonia and his larynx has to heal some more and then we'll try again in a few days. In the meantime, without that chocolate-flavored crap going into his stomach- he won't have any strength.
While the ENT was there I asked her if she liked the look of Jim's neck...is everything o.k.? She says, "Why- does something not look right to you?" and I tell her, "It looks o.k. to ME, but it looked o.k. to me LAST week, too. I'm asking YOU." So she says it looks like it's healing well and she's going to have a different kind of drain put into Jim's neck tomorrow. They keep a drain in that they flush every day to make sure there's no infection building up in the space. So the poor guy's got a drain stikcing out of his neck that he keeps in his hospital gown pocket, i.v.'s all over the place, and a big tube up his nose and down his stomach. At least they took the catheter out again so he can get up and go to the bathroom himself.
Now onto something a little amusing: You know how I've said that Jim's under "Contact Restrictions" because of his staph infection? Well, apparently this morning no one looked at his chart and they took him through a walk around the ward...all up and down the hallway. And his nurse in the afternoon wasn't even putting a gown on when she came in the room. So much for THAT, right? And you wonder why these things run all through hospitals.
I was able to get the scans on Jim's tumor on CD. I've posted a REAL-LIFE picture of his tumor pre-surgery on this blog. It looks like a cartoon, but I assure you, it's real. You can see the main carotid artery at the bottom and then it splits into the inner and outer carotid (one feeds blood to your brain, and one feeds it to your face). You can't even SEE the inner and outer arteries because the tumor was so entrenched around the thing.
Monday, March 12, 2007
Monday March 12, 2007 7:19 PM
I'm doing the post early tonight because, man, I've got to get to bed earlier. I don't know if it's the tension, the meds I'm on, the fact that my body's trying to catch up on 16 years of sleep deprivation, or a little bit of all three. Plus when Jim's in the ICU you're stuck going to visit him on the NURSES' schedule and it's very restrictive. I just don't want to have to get back to the hotel at 10 PM again tonight. Plus Rome is on tonight at 9 and Jim, I love you babe, but I really want to catch Rome, and you're feeling better so I think you can make it an evening without me.
I went this afternoon (I'm sooooooo SICK of that place...I'm sick of the look of it, the smell of it, the fact that I know almost all of the nurses...EVERYTHING) and Jim's still saying he feels good, but the nurse told me this morning that his white blood cell count is up, so that scared me to death. I paged his doctor, because they NEVER call with any updates and they won't allow family in the room while the doctor's are doing rounds, so you can't find anything out unless you page these people. The doctor says he looks good, don't worry about his white blood cell count going up...it's just a natural reaction to the body fighting off infection, yadda yadda yadda. I told her I'm scared to death about the condition of his neck and any more ateries going bad. She said, well- right now he's out of arteries. They've all been tied off. I also spoke to his vascuar surgeon, Dr. Jewell, and asked how he liked the look of Jim's throat. He says it looks good. I told him that according to Jim he says his throat feels better than it ever did since he's been here, and Dr. Jewell said a lot of times the patient knows more than the doctor, so I should take that as a good sign. (Yeah- the patient's WIFE sometimes knows more than the doctor too, but no one listens to ME.) I'm still on pins and needles- just waiting for the other shoe to drop, and I had to pop a valium today for my nerves. I can't go through another surgery. Although my mother says if God forbid he needs one that yes- I'll take it because I have to. Perish the thought. Okay Mom....SHUT YOUR MOUTH!
Jim's throat, on the inside, is still sore because of the intubation. He flunked his swallowing test today, but the doctors said they're not surprised so soon after surgery. The funny thing is, he passed the swallowing test for solids, but not for liquids, which makes no sense. But if he passed it once he'll pass it again. We just have to wait a couple more days for them to repeat the test.
The infectious disease guy came in today while I was there and said he was reducing Jim's antibiotics down from four to two, so I guess THAT's a good sign, too. He thinks it was a yeast infection in his blood that ate the artery. Well, I happen to know that it's possible to get a yeast infection from your bad teeth so I still think his teeth had somthing to do with this. I can't WAIT for that biopsy to come back at the end of the week.
And now for something really stupid: So when I go to see him, because he has this staph infection, they make me put on a paper gown and gloves before I can go into the room to see him now. But they let me take my purse and my belongings in with me. So if Jim is so contaminated and they need to take such precautions, I'm spreading the staph infection around on my purse. They even let me bring in his portable dvd player yesterday so we could watch Borat, and Jim touched the thing, then I carried it back to the hotel with me. Dumb, dumb, dumb. I think this paper gown thing is meaningless. But if it will help Jim get better I'd gladly take his staph infection from him. I can handle it. I wish I could do something like in the Green Mile where that big dude just sucked the sickness out of you and then spit it at bad people in little flying dust particles. I'd spit mine at Little Miss Sunshine. No, better yet- Miss Dingledong from Aetna. Then I'd say, "Sorry- we can't treat you yet. We have to go back to the beginning".
So a few people now have asked me about what bipolar is exactly. It's kind of like highs and lows to an extreme, extreme degree. I mean, everyone has highs and lows- that's just life. But when you're low you want to kill yourself, and when you're high you're mind is racing, racing, racing, and you can't stop it. Sometimes you can even get misdiagnosed with schizophrenia because it's possible to have hallucinations. When I was a child I did have hallucinations (yes Mom- I never told you because you would have thought I was crazy) like the devil's head floating over me and talking to me, all kinds of crazy shit. But they didn't really scare me, I felt I could conquer them because I was stronger than them, and I did well in school...no problems (I was a pretty good kid)...and luckily that all went away by puberty. My bipolar was a little odd because I spent 10 years depressed and 16 years manic. Most people are more cyclical than that. It really doesn't have anything to do with your childhood or things that happened to you. It just happens, and may be genetic. Well, there's some certifiable people on both sides of my family so I definitely got the raw end of the gene pool. When you're manic you can also get overly aggressive (as anyone who's witnessed my phone conversations with some vendors will attest to- but they deserved it...bipolar or not) and some people even wind up in jail. I would focus on the most stupid stuff and obsess and obsses about it, for no good reason. I KNEW I had no good reason, but couldn't stop. But I figured- hey- I can't be that bad....I've never been fired from a job. Thermador kept my crazy ass around for 8 1/2 years and Miele's kept my crazy ass around for 12. I even TRIED to get fired from a summer job once as a short-order cook...I tried SO hard for them to fire me, but they just thought I was hysterically funny and kept me around. I thought if I got treated I'd lose my "edge", my sense of humor, my ability to work well. But this latest stress just sent me crashing to the bottom again (which it would do for any normal person) but to the extreme, and I knew I had to finally face up to it and get treated. And I'm not afraid to talk about it because let's face it...other people may have similar problems too and are struggling. Talk about it. Don't hide it under a rug and keep it a secret. You wouldn't hide the fact that you had diabetes or any other disease, right?
Tomorrow will be somewhat interesting because they're allowing me to pick up a copy of the 3D scan they did of Jim's tumor. They give it to you on a cd so I hope there's a way I can get a real life picture of it on this blog. It was about as big as the palm of your hand. Before he went for his surgery Jim drew a really wacky picture of the tumor busting out of his neck. I've added it to this blog.
I went this afternoon (I'm sooooooo SICK of that place...I'm sick of the look of it, the smell of it, the fact that I know almost all of the nurses...EVERYTHING) and Jim's still saying he feels good, but the nurse told me this morning that his white blood cell count is up, so that scared me to death. I paged his doctor, because they NEVER call with any updates and they won't allow family in the room while the doctor's are doing rounds, so you can't find anything out unless you page these people. The doctor says he looks good, don't worry about his white blood cell count going up...it's just a natural reaction to the body fighting off infection, yadda yadda yadda. I told her I'm scared to death about the condition of his neck and any more ateries going bad. She said, well- right now he's out of arteries. They've all been tied off. I also spoke to his vascuar surgeon, Dr. Jewell, and asked how he liked the look of Jim's throat. He says it looks good. I told him that according to Jim he says his throat feels better than it ever did since he's been here, and Dr. Jewell said a lot of times the patient knows more than the doctor, so I should take that as a good sign. (Yeah- the patient's WIFE sometimes knows more than the doctor too, but no one listens to ME.) I'm still on pins and needles- just waiting for the other shoe to drop, and I had to pop a valium today for my nerves. I can't go through another surgery. Although my mother says if God forbid he needs one that yes- I'll take it because I have to. Perish the thought. Okay Mom....SHUT YOUR MOUTH!
Jim's throat, on the inside, is still sore because of the intubation. He flunked his swallowing test today, but the doctors said they're not surprised so soon after surgery. The funny thing is, he passed the swallowing test for solids, but not for liquids, which makes no sense. But if he passed it once he'll pass it again. We just have to wait a couple more days for them to repeat the test.
The infectious disease guy came in today while I was there and said he was reducing Jim's antibiotics down from four to two, so I guess THAT's a good sign, too. He thinks it was a yeast infection in his blood that ate the artery. Well, I happen to know that it's possible to get a yeast infection from your bad teeth so I still think his teeth had somthing to do with this. I can't WAIT for that biopsy to come back at the end of the week.
And now for something really stupid: So when I go to see him, because he has this staph infection, they make me put on a paper gown and gloves before I can go into the room to see him now. But they let me take my purse and my belongings in with me. So if Jim is so contaminated and they need to take such precautions, I'm spreading the staph infection around on my purse. They even let me bring in his portable dvd player yesterday so we could watch Borat, and Jim touched the thing, then I carried it back to the hotel with me. Dumb, dumb, dumb. I think this paper gown thing is meaningless. But if it will help Jim get better I'd gladly take his staph infection from him. I can handle it. I wish I could do something like in the Green Mile where that big dude just sucked the sickness out of you and then spit it at bad people in little flying dust particles. I'd spit mine at Little Miss Sunshine. No, better yet- Miss Dingledong from Aetna. Then I'd say, "Sorry- we can't treat you yet. We have to go back to the beginning".
So a few people now have asked me about what bipolar is exactly. It's kind of like highs and lows to an extreme, extreme degree. I mean, everyone has highs and lows- that's just life. But when you're low you want to kill yourself, and when you're high you're mind is racing, racing, racing, and you can't stop it. Sometimes you can even get misdiagnosed with schizophrenia because it's possible to have hallucinations. When I was a child I did have hallucinations (yes Mom- I never told you because you would have thought I was crazy) like the devil's head floating over me and talking to me, all kinds of crazy shit. But they didn't really scare me, I felt I could conquer them because I was stronger than them, and I did well in school...no problems (I was a pretty good kid)...and luckily that all went away by puberty. My bipolar was a little odd because I spent 10 years depressed and 16 years manic. Most people are more cyclical than that. It really doesn't have anything to do with your childhood or things that happened to you. It just happens, and may be genetic. Well, there's some certifiable people on both sides of my family so I definitely got the raw end of the gene pool. When you're manic you can also get overly aggressive (as anyone who's witnessed my phone conversations with some vendors will attest to- but they deserved it...bipolar or not) and some people even wind up in jail. I would focus on the most stupid stuff and obsess and obsses about it, for no good reason. I KNEW I had no good reason, but couldn't stop. But I figured- hey- I can't be that bad....I've never been fired from a job. Thermador kept my crazy ass around for 8 1/2 years and Miele's kept my crazy ass around for 12. I even TRIED to get fired from a summer job once as a short-order cook...I tried SO hard for them to fire me, but they just thought I was hysterically funny and kept me around. I thought if I got treated I'd lose my "edge", my sense of humor, my ability to work well. But this latest stress just sent me crashing to the bottom again (which it would do for any normal person) but to the extreme, and I knew I had to finally face up to it and get treated. And I'm not afraid to talk about it because let's face it...other people may have similar problems too and are struggling. Talk about it. Don't hide it under a rug and keep it a secret. You wouldn't hide the fact that you had diabetes or any other disease, right?
Tomorrow will be somewhat interesting because they're allowing me to pick up a copy of the 3D scan they did of Jim's tumor. They give it to you on a cd so I hope there's a way I can get a real life picture of it on this blog. It was about as big as the palm of your hand. Before he went for his surgery Jim drew a really wacky picture of the tumor busting out of his neck. I've added it to this blog.
Sunday, March 11, 2007
Sunday March 11, 2007 10:43 PM
So I went to see Jim twice again today...once in the afternoon and once in the evening. He insists he's fine...says he feels fine...doesn't need much pain medication...the thing that hurts the most is his throat because it's sore from being intubated for the third time. I know how those can be because I've had them a few times and it does leave you with a sore throat for a few days. But there's nothing weird leaking out of the gazzilion drains coming out of him...everything is clear- not cloudy like the last time. So I'm hoping this is it. But I can't help but be on pins and needles. Every time the phone rings from a 781 area code my heart falls down to my stomach. Today it rang....but it was the music store calling to say my copy of Borat was in. So I brought Jim's dvd player and we watched it in his room. We've already seen it twice, but that is ONE funny movie. He keeps begging me to bring him ice cream. I told him no way...not until you pass your swallowing test again. I am NOT bringing contraband food to his room and get myself in trouble. Then they'll look at the drain coming out of his stomach and say, "What the hell is THAT?" and probably send him for MRI's again. Yes- he has to go for another swallowing test because of the new surgery. I think they plan on doing it tomorrow. The nurse said that ice cream might make his throat feel better anyway so I'm hoping he passes.
So I keep trying to stay positive but it's very hard. I'm just waiting for a doctor to tell me he's got stuff going on in his neck again. Even when they do release him I think we'll stay here for a couple of extra days just to make sure nothing starts swelling or leaking or bleeding.
But then I think about how I almost died after I had Jimmy and how I had three surgeries to save my life...and here I am. (The fourth surgery was just to clean up the scar tissue left by the other three.) And I think about how they kept sending me HOME in between and then I'd be laying on the bathroom floor, full of blood clots and in so much pain I was begging Jim to put a bullet through my head and put me out of my misery. And I think about how I told the doctor that if he was trying to save all my body parts just get rid of them because I'm done using them, and he told me that I needed a hysterectomy, but he couldn't do it because I'd already lost so much blood I would die on the table. All he could do was D & C's and pray. My blood level was lower than Jim's even after his carotid blew. And I'm still here. I STILL have nerve damage throughout my entire abdomen from that mess, but over the years it's gotten better and better. They tried their best to kill me but it didn't work. I am actually one of only a handful of women that had what's called an "accreta" and kept all of my parts and didn't die. I can fully understand now the torment that Jim must have been going through when that happened to me. I'm living it now only in reverse. And I played the Mega Millions lottery last week and STILL didn't win.
So I keep trying to remember how I made it...Jim can make it too. Just think positive, Pam, and take it day by day.
So I keep trying to stay positive but it's very hard. I'm just waiting for a doctor to tell me he's got stuff going on in his neck again. Even when they do release him I think we'll stay here for a couple of extra days just to make sure nothing starts swelling or leaking or bleeding.
But then I think about how I almost died after I had Jimmy and how I had three surgeries to save my life...and here I am. (The fourth surgery was just to clean up the scar tissue left by the other three.) And I think about how they kept sending me HOME in between and then I'd be laying on the bathroom floor, full of blood clots and in so much pain I was begging Jim to put a bullet through my head and put me out of my misery. And I think about how I told the doctor that if he was trying to save all my body parts just get rid of them because I'm done using them, and he told me that I needed a hysterectomy, but he couldn't do it because I'd already lost so much blood I would die on the table. All he could do was D & C's and pray. My blood level was lower than Jim's even after his carotid blew. And I'm still here. I STILL have nerve damage throughout my entire abdomen from that mess, but over the years it's gotten better and better. They tried their best to kill me but it didn't work. I am actually one of only a handful of women that had what's called an "accreta" and kept all of my parts and didn't die. I can fully understand now the torment that Jim must have been going through when that happened to me. I'm living it now only in reverse. And I played the Mega Millions lottery last week and STILL didn't win.
So I keep trying to remember how I made it...Jim can make it too. Just think positive, Pam, and take it day by day.
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