Today started out like a good day. Jim's parents and Jimmy and were getting ready to get to the the hospital in the mid morning. The kids from Jimmy's school had all made a get well card for him and Jimmy was looking forward to giving it to him. When we got up to his floor, lights were going off and alarms were blaring. Jim was coding. They shuffled us out of the hallway and into a private conference room. Doctors and nurses were running past us full speed ahead. I begged the nurses that came in to tell us what was going on- he was doing so well- WHAT HAPPENED? All they would say is that they're doing their best to save him. Jim's parents were worried and frantic, but I lost it. I proceeded to have a panic attack and laid on the floor, so they took me to the emergency room. I was sure we were going to lose him. Nick, Jim's dad, was great and came down with me while they hooked to up to monitors and gave me an i.v. I felt so sorry for his parents. That's their son and they have as much right as me to be panicked, yet his Dad is coming with me to the emergency room. I kept apologizing. "I'm so sorry, I'm so sorry. I should have held it together but I couldn't. I should have been stronger. I can't lose him. I can't have Jimmy grow up and not know him..." The nurse told me she'd give me something to knock my ass out only if I stopped apologizing.
Nick, Judy, Jimmy and Jim's friends waited down in the surgical waiting room. Nick came to get me after I woke up from my knock-out and we waited. Finally the doctor came in and told us what happened, and that they were taking him back to the ICU. Nick and I went upstairs to Jim's old room to get his things, and they already had the place cleaned out like he didn't exist. They had taken his stuff to the ICU unit already.
Arraparently what happened with that Jim's carotid artety burst and he was bleeding out. They suspect it might be because part of if was weakened during the surgery. Two days prior to surgery he had a carotid artery balloon test where they block off part of the carotid and see if there's enough peripheral blood flow to supply your brain. It's not just the carotid that supplies to brain, but all the branches that come off it. When they did the test they determined that Jim had enough peripheral blood flow to supply his brain in case they needed to do that in surgey; however, during the surgey he had on the 14th they didn't feel the need for it. Well, apparently it had developed a week spot where the tumor had to be cut away and that's what burst. So they rushed him into the emergency room and tied it off. They tried to take a vein from his leg and re-structure it, but the surgeon felt that the stitches werent going to hold.
They wouldn't let us in to see him right away (see post #1 and you'll know why) so we went back to the hotel and got room service and cried. I don't know what I would have done without Nick and Judy there. If I had walked onto that floor and he coded I would have never layed down on the floor, I would have just dropped like a stone.
So in the end Jimmy never got to see him. And neither did his friends. But Nick and Judy and I saw him. And then my parents drove up and saw him as well. Had I not been up here two weeks holding it together myself I might have been able to hold it together more, but I think these two weeks have taken a huge toll on me. I'm pretty sure my parents are staying until Tuesday. My inlaws are afaid to leave me alone now. But we're not sure what to do about Jimmy and school. Maybe I can arrange a leave of absense based on the circumstances and arrange for a tutor. Well, it's too much to think about tonight. I've got to get some sleep for now, but that'll be hard necause Jimmy always kicks me in bed.
Jim can't get your e-mails now because he's in intensive care and he'll be kept asleep for a couple of days. Since they had to re-open his incision we're back to where we started almost as if the last two weeks were wasted. I just want to get this man home and healthy and back to his family and I want our old lives back. But I'm helpless to do it.
Saturday, February 24, 2007
Friday, February 23, 2007
Friday February 23, 2007 9:25 PM
Note to the wacky Miele guys who sent the thing I had to hide in Jim's closet: That's a pencil holder? I had no idea. You can't imagine what was going through my mind.
And I just walked into the hotel lobby tonight and want to thank the two lovely women who sent the plant and fruit. You're right- I DO need some fiber. I'm actually eating a pear right now as I write this. The guy at the front desk says, "Gee, Mrs. Primiani....you get MORE packages...." I've been here so long they don't just call me and tell me there's a package anymore- they bring them up to my room.
I went this morning for my stress test. I got in and out of there pretty quick, but I don't know anything. They're faxing the results to my cardiologist at Deborah, and even if the test showed my heart was an hour away from exploding he would never call me. They have their procedures, you know. So I tried to book a consult with a cardiologist here but I can't get an appointment until March 16th. The woman in booking even called around begging for me, but no go. No WAY am I gonna be here until March 16th. Oh God...I hope not. And to the man in a very high position at Miele who thought I would collapse during the excercise portion, I did really well for a middle-aged out of shape broad who hasn't excercised in years. I just "schpritzed" a little bit.
Jim must be healing because he's getting very GROUCHY. Geez. He's still got the feeding tube because his incision is not healed enough to put any fluids in his mouth for the swallowing test. What they're doing now is coming by every day and putting some sort of iodine stuff in it to see if it still leaks. I guess they can see clearly because of the color of this stuff. They say he's healing very well, but not well enough yet. And the junk they pump into his stomach doesn't give him any kind of satisfaction like he's eaten something, so he's incredibly hungry, the incision still hurts, his tooth still hurts, he's mobile but bored and confined to four walls, feels helpless, wants to go home and he's restless and miserable. I stopped by right after my stress test just to check in, and in walks the psychiatrist. I always have the BEST timing. She decided an anti-depressant would be a good idea, but can't give him one until he can swallow because they don't make these things in an i.v. formulation, but in the meantime she prescribed a mild tranquilizer. Let me tell you...he needs a tranquilizer GUN, like the kind they use to get bears out of trees. He told me after he got the first dose that he LOVED it.
I bought him some more dvd's tonight (ANYTHING to keep him occupied and happy) and brought them over around 7pm. I walk in and he's holding his face in a towel because the feeding tube was falling out and he was dripping chocolate-flavored syrup all over the place. The poor guy...he had just gotten himself all cleaned up because his family is going to see him tomorrow, and now he's covered in i.v. feeding fluid goop. And he's PISSED OFF because apparently they had been paging a doctor for an hour before I got there, and no one had shown up yet to put the thing back in. When they put those things in they have to X-ray you to make sure it's in your stomach when they're done, so it's not like just anyone can do it. He''s jumping out of his skin..."I'm going to pull this damn thing out MYSELF!" he tells me. I can imagine the frustration because if it had been me I wouldn't have even waited THAT long to pull the thing out myself. Finally the nurse comes in, says she got a hold of the resident on the phone, and he said just pull it out for tonight and they'll put a new one in tomorrow. It was half out anyway so it didn't take much. He was happier because now he could breathe, but still agitated. He asks the nurse if she's ever had one of those things in before, and she says no, what's it like? She should have never asked him that because he gave her an earful. He sticks his finger near her face and says, "It's like I stuck my finger up your nose further and further and further and kept moving it around and just left it there." Well, at least he's getting his energy back.
I'm waiting up for Jimmy and Jim's parents and Jim's two friends to get here. I don't think they'll be here until around 1 a.m. I'm looking forward to seeing the little guy.
And I just walked into the hotel lobby tonight and want to thank the two lovely women who sent the plant and fruit. You're right- I DO need some fiber. I'm actually eating a pear right now as I write this. The guy at the front desk says, "Gee, Mrs. Primiani....you get MORE packages...." I've been here so long they don't just call me and tell me there's a package anymore- they bring them up to my room.
I went this morning for my stress test. I got in and out of there pretty quick, but I don't know anything. They're faxing the results to my cardiologist at Deborah, and even if the test showed my heart was an hour away from exploding he would never call me. They have their procedures, you know. So I tried to book a consult with a cardiologist here but I can't get an appointment until March 16th. The woman in booking even called around begging for me, but no go. No WAY am I gonna be here until March 16th. Oh God...I hope not. And to the man in a very high position at Miele who thought I would collapse during the excercise portion, I did really well for a middle-aged out of shape broad who hasn't excercised in years. I just "schpritzed" a little bit.
Jim must be healing because he's getting very GROUCHY. Geez. He's still got the feeding tube because his incision is not healed enough to put any fluids in his mouth for the swallowing test. What they're doing now is coming by every day and putting some sort of iodine stuff in it to see if it still leaks. I guess they can see clearly because of the color of this stuff. They say he's healing very well, but not well enough yet. And the junk they pump into his stomach doesn't give him any kind of satisfaction like he's eaten something, so he's incredibly hungry, the incision still hurts, his tooth still hurts, he's mobile but bored and confined to four walls, feels helpless, wants to go home and he's restless and miserable. I stopped by right after my stress test just to check in, and in walks the psychiatrist. I always have the BEST timing. She decided an anti-depressant would be a good idea, but can't give him one until he can swallow because they don't make these things in an i.v. formulation, but in the meantime she prescribed a mild tranquilizer. Let me tell you...he needs a tranquilizer GUN, like the kind they use to get bears out of trees. He told me after he got the first dose that he LOVED it.
I bought him some more dvd's tonight (ANYTHING to keep him occupied and happy) and brought them over around 7pm. I walk in and he's holding his face in a towel because the feeding tube was falling out and he was dripping chocolate-flavored syrup all over the place. The poor guy...he had just gotten himself all cleaned up because his family is going to see him tomorrow, and now he's covered in i.v. feeding fluid goop. And he's PISSED OFF because apparently they had been paging a doctor for an hour before I got there, and no one had shown up yet to put the thing back in. When they put those things in they have to X-ray you to make sure it's in your stomach when they're done, so it's not like just anyone can do it. He''s jumping out of his skin..."I'm going to pull this damn thing out MYSELF!" he tells me. I can imagine the frustration because if it had been me I wouldn't have even waited THAT long to pull the thing out myself. Finally the nurse comes in, says she got a hold of the resident on the phone, and he said just pull it out for tonight and they'll put a new one in tomorrow. It was half out anyway so it didn't take much. He was happier because now he could breathe, but still agitated. He asks the nurse if she's ever had one of those things in before, and she says no, what's it like? She should have never asked him that because he gave her an earful. He sticks his finger near her face and says, "It's like I stuck my finger up your nose further and further and further and kept moving it around and just left it there." Well, at least he's getting his energy back.
I'm waiting up for Jimmy and Jim's parents and Jim's two friends to get here. I don't think they'll be here until around 1 a.m. I'm looking forward to seeing the little guy.
Thursday, February 22, 2007
Thursday February 22, 2007 10:12 PM
So I got Jim on the phone this morning and he sounded pretty good. But apparently he had a really, really bad night last night. This is from his note:
"Let me get through this night, please. This is the worst. My neck was leaking, so I had to get if fixed- no big deal- now my damn i.v. is giving out, and every one of these numbskulls can't put a new line in. I can do this, but it will not be easy. I need the i.v. line for morphine...old people are screaming...it's a circus. I can't take this....Alright- finally got a new i.v. line- took her 15 minutes to do, but who cares. She almost cried looking at me in pain. Anyway- the nurse came back, gave me my meds and my morphine, and now I'm o.k.- finally o.k. A new day. If I can live through that I can live through the rest of this. My swallowing is already improving. I am confident again. I can do this. I can do this. I will do this. So I have to master the art of swallowing again. Something you normally take for granted, but I can't. Anyway, the tumor's gone, now begins the relearning. That's probably why I'm sitting here watching "Dirty Jobs"."
I went out today and bought Jim one of those portable DVD players, and we had some "News Radio" DVD's, so that perked him up a lot. I think he's really looking forward to his parents, Jimmy, and his friends coming up over the weekend. He actually let the nurse's aid put one of those dry shampoo cap things on his head. The aide asks me, "Are you two married?" and I said, "You can TELL, can't you?" But if nothing else tells you he's improving the fact that he's rolling his eyes at me and busting my chops says it all. And at least he's not the worst looking case in this ward anymore. Wooo....let me tell you. There's a few in here I think they've got the hole dug for already. Yes- I know I'm going to hell for that one.
And thanks to the Miele men with the sick minds (you know who you are) who sent Jim the package with two wacky things in it. I won't mention what they are, but I'll say this. One was tame enough to leave out in Jim's room in plain view. The other one had to be hidden away. You think THIS blog's not p.c.- oh boy.
Other than that, nothing new. I've got my stress test at 7 a.m. tomorrow, so leave me a voicemail if you need me because I'll be out of commission for a little while. I'm leaving my four cell phones....yes four cell phones...in the car. I've got my personal one, my Miele one, Jim's personal one (because it's the only number Jim's Dad ever programmed into his phone) and Jim's Miele one. It's really hilarious when three of them are ringing at once. That's been my record so far.
"Let me get through this night, please. This is the worst. My neck was leaking, so I had to get if fixed- no big deal- now my damn i.v. is giving out, and every one of these numbskulls can't put a new line in. I can do this, but it will not be easy. I need the i.v. line for morphine...old people are screaming...it's a circus. I can't take this....Alright- finally got a new i.v. line- took her 15 minutes to do, but who cares. She almost cried looking at me in pain. Anyway- the nurse came back, gave me my meds and my morphine, and now I'm o.k.- finally o.k. A new day. If I can live through that I can live through the rest of this. My swallowing is already improving. I am confident again. I can do this. I can do this. I will do this. So I have to master the art of swallowing again. Something you normally take for granted, but I can't. Anyway, the tumor's gone, now begins the relearning. That's probably why I'm sitting here watching "Dirty Jobs"."
I went out today and bought Jim one of those portable DVD players, and we had some "News Radio" DVD's, so that perked him up a lot. I think he's really looking forward to his parents, Jimmy, and his friends coming up over the weekend. He actually let the nurse's aid put one of those dry shampoo cap things on his head. The aide asks me, "Are you two married?" and I said, "You can TELL, can't you?" But if nothing else tells you he's improving the fact that he's rolling his eyes at me and busting my chops says it all. And at least he's not the worst looking case in this ward anymore. Wooo....let me tell you. There's a few in here I think they've got the hole dug for already. Yes- I know I'm going to hell for that one.
And thanks to the Miele men with the sick minds (you know who you are) who sent Jim the package with two wacky things in it. I won't mention what they are, but I'll say this. One was tame enough to leave out in Jim's room in plain view. The other one had to be hidden away. You think THIS blog's not p.c.- oh boy.
Other than that, nothing new. I've got my stress test at 7 a.m. tomorrow, so leave me a voicemail if you need me because I'll be out of commission for a little while. I'm leaving my four cell phones....yes four cell phones...in the car. I've got my personal one, my Miele one, Jim's personal one (because it's the only number Jim's Dad ever programmed into his phone) and Jim's Miele one. It's really hilarious when three of them are ringing at once. That's been my record so far.
Wednesday, February 21, 2007
Wednesday February 21, 2007 10:00 PM
I finally listened to my mother and went through hell on earth to try and coordinate my nuclear stress test. I go this Friday to Lahey at 7:00 a.m. The nurse here who was coordinating everything between Deborah Heart and Lung in NJ and the cardiology department at Lahey was very helpful, but she told me several times, "You know- the cardiologist says you really should go to the emergency room," and I said "Yeah, yeah...I know. But YOU know what a zoo those places are." At least by Friday I'll know if I have any blockages or not. The doctor at Deborah had three theories for why my heart is beating too fast and getting weak, well- really four theories: 1) a blockage somewhere, 2) something wrong with my thyroid, 3) a pheochromocytoma like Jim had (but if that were the case it would most likely be in a more conventional place and not in the neck) or 4) shit happens and I'll just have to start taking medication. I'm rooting for thyroid....and hopefully UNDERactive thyroid. Woo hoo! I'll have a party if that's what's wrong with me. Body Mass Index of 16, here I come! I want to look like a heroin model and then come strutting into the office wearing Prada singing, "I'm...too sexy for my shirt....too sexy for my shirt....so sexy it huuuuuurts." Then I'll get botox and try out for Janice Dickinson's modeling agency. And you guys will all be thrilled because I'll stop harping on and on about how I want liposuction. I want to be so thin I go outside and dogs try to bury me...I can't get too close to the pencil sharpener because I might fall in...they publish my picture in Ethiopia and the natives send me food.
So the social worker came in and had a long chat with Jim and I today and went over some coping strategies for Jim. She's also going to recommend a psychiatrist because some anti-depressants may be in order. Then about an hour later poor Jim had another set back. Remember how I said that yesterday they removed the stiches from his chin? The crew came in today to give him his swallowing assessment. They started by giving him a cup of water to swish around his mouth and about 5 seconds later he's leaking out of the bottom of his chin. Yes...Jim's face sprung a leak. So now they cart him down to the otolaryngologist's office and he has to put a few more stiches in. But the bad news is that now he can have no more liquids or anything in his mouth for three more days until his chin heals better. So the swallowing assessment is postponed again. But I FINALLY got the otolaryngologist to give him something for his abcessed tooth. The guys says to me, "Gee, his teeth are really in bad shape." Oh, no kidding Captain Obvious. And I mentioned the anti-depressants again, because now Jim's even further in the dumps from this set back, and he agreed to prescribe something. I's so glad I'm here with him or nothing would get done properly, because it's not like he can speak for himself. You have to nag and push and nag and push these people into getting him the proper help. Part of the problem is that Jim has too many doctors...a vascular surgeon, Dr. Jewell, an otolaryngologist, Dr. Dolan, and a neurologist, Dr. David. Dolan was in charge of opening him up for the surgery and deciding on the best way to go about that. Jewell was in charge of removing the tumor, and David was in charge of directing Jewell so that he did minimal nerve damage because the thing was coming out of his spine and was under his brain. Plus he's got other doctors coming in and out all day because Jim's a once-in-a-career case so they ALL want to gawk at him. The miscommunications stem from the fact that there's just too many people involved and they don't always talk to one another. I have to keep harping on them separately until they get their act together and get on the same page. Because Jim's case is so rare this also poses a problem for the social worker. Normally she would try and hook people up with other patients that have gone through the same thing so they can relate to one another's experiences. She'll never find anyone with a pheochromacytoma carotid body tumor. It just ain't happening.
Remember how I said two of Jim's old friends are coming up for the weekend? Well, Jim's parents decided to meet up with them and hitch a ride. They're bringing Jimmy with them too. I'm a little nervous about Jimmy seeing him in this setting, but the social worker thought it might be a good idea. And I really miss Jimmy, too, so it'll be good for me.
I'm starting to get less depressed about this whole thing, mainly because I think I'm getting used to it. I gave up on the idea of bringing my husband home somewhat normal and functional by this time. Or maybe I'm just getting numb. I can't really tell. Or maybe it's just because I'm becoming an alcoholic and a junkie. I wonder how our insurance coverage is for re-hab?
Jim's also to the point that if he wants to he could shower and wash his hair, but he won't. I think a lot of that has to do with the depression. And let me tell you....he STINKS! He stinks so bad, I don't know how to describe it. It's like a cross between cow manure and a over-filled dumpster at the back of Shop Rite in the middle of July. I said to him today, "You know, if you wanted to, the nurse could help you take a shower, or at least wash your hair." I know exactly what he's doing...they probably ask him if he wants to get washed up and he says, "No- that's o.k," and they don't push the issue because hell- it's less work for them and they're used to smelling bad things. I've been in the hospital before, and there are ways of getting around your plugged in apparatus for 10 minutes to get your hair washed. I told him when his friends come up this weekend we're just going to shave his head. We'll make a party out of it.
So the social worker came in and had a long chat with Jim and I today and went over some coping strategies for Jim. She's also going to recommend a psychiatrist because some anti-depressants may be in order. Then about an hour later poor Jim had another set back. Remember how I said that yesterday they removed the stiches from his chin? The crew came in today to give him his swallowing assessment. They started by giving him a cup of water to swish around his mouth and about 5 seconds later he's leaking out of the bottom of his chin. Yes...Jim's face sprung a leak. So now they cart him down to the otolaryngologist's office and he has to put a few more stiches in. But the bad news is that now he can have no more liquids or anything in his mouth for three more days until his chin heals better. So the swallowing assessment is postponed again. But I FINALLY got the otolaryngologist to give him something for his abcessed tooth. The guys says to me, "Gee, his teeth are really in bad shape." Oh, no kidding Captain Obvious. And I mentioned the anti-depressants again, because now Jim's even further in the dumps from this set back, and he agreed to prescribe something. I's so glad I'm here with him or nothing would get done properly, because it's not like he can speak for himself. You have to nag and push and nag and push these people into getting him the proper help. Part of the problem is that Jim has too many doctors...a vascular surgeon, Dr. Jewell, an otolaryngologist, Dr. Dolan, and a neurologist, Dr. David. Dolan was in charge of opening him up for the surgery and deciding on the best way to go about that. Jewell was in charge of removing the tumor, and David was in charge of directing Jewell so that he did minimal nerve damage because the thing was coming out of his spine and was under his brain. Plus he's got other doctors coming in and out all day because Jim's a once-in-a-career case so they ALL want to gawk at him. The miscommunications stem from the fact that there's just too many people involved and they don't always talk to one another. I have to keep harping on them separately until they get their act together and get on the same page. Because Jim's case is so rare this also poses a problem for the social worker. Normally she would try and hook people up with other patients that have gone through the same thing so they can relate to one another's experiences. She'll never find anyone with a pheochromacytoma carotid body tumor. It just ain't happening.
Remember how I said two of Jim's old friends are coming up for the weekend? Well, Jim's parents decided to meet up with them and hitch a ride. They're bringing Jimmy with them too. I'm a little nervous about Jimmy seeing him in this setting, but the social worker thought it might be a good idea. And I really miss Jimmy, too, so it'll be good for me.
I'm starting to get less depressed about this whole thing, mainly because I think I'm getting used to it. I gave up on the idea of bringing my husband home somewhat normal and functional by this time. Or maybe I'm just getting numb. I can't really tell. Or maybe it's just because I'm becoming an alcoholic and a junkie. I wonder how our insurance coverage is for re-hab?
Jim's also to the point that if he wants to he could shower and wash his hair, but he won't. I think a lot of that has to do with the depression. And let me tell you....he STINKS! He stinks so bad, I don't know how to describe it. It's like a cross between cow manure and a over-filled dumpster at the back of Shop Rite in the middle of July. I said to him today, "You know, if you wanted to, the nurse could help you take a shower, or at least wash your hair." I know exactly what he's doing...they probably ask him if he wants to get washed up and he says, "No- that's o.k," and they don't push the issue because hell- it's less work for them and they're used to smelling bad things. I've been in the hospital before, and there are ways of getting around your plugged in apparatus for 10 minutes to get your hair washed. I told him when his friends come up this weekend we're just going to shave his head. We'll make a party out of it.
Tuesday, February 20, 2007
Tuesday February 20, 2007 10:23 PM
Before I left for the hospital today I called Jim's surgeon's office. I told them that they're doing a great job with the body, but I think Jim really needs a social worker or a psychiatric consult of some sort because he's so depressed. If the mind is not in the right state then that's only going to make it harder for the body to heal. Of course, why these people don't think about this stuff in the first place is beyond me. I think anyone who's been through major surgery that leaves you debilitated in some fashion should AUTOMATICALLY get a social worker to help them deal with it. And not just a social worker for the patient, but for the family as well. (Of course, everyone knows that I'm beyond the social worker state, though. I'm a full-fledged member of the cookoo club, and I've been for years. "Say it loud...I'm nuts and I'm proud!") I think sometimes they just act like these patients are nothing more than a hunk of raw hamburger sitting in a bed and they just poke you every now and then to see if you're done. It reminds me of the old commercial...."Is it soup yet, Mom?" "No, it's not soup yet." Well, poor Jim is not a pot of soup. So apparently within 10 minutes of my phone call they had sent someone down.
My Mom called me this morning and is all over me to try and get in to see a cardiologist while I'm here, but of course all I hear is "blah blah BLAH blah BLAH...." Since when do I listen to anybody? I'd have to call Deborah Hospital in NJ to try and get a copy of my records, which is a feat in itself because those people don't hear a WORD you say, then I'd have to navigate the massive beaurocracy that is Lahey Clinic, and I think Jim and I will have grandchildren by the time I'd be able to get all that done. Hell, if I haven't had a heart attack yet that process will be sure to GIVE me one.
Oh, by the way....Did I forget to mention that I went to a bar the other night and sang with the band? It was a bar for the middle-aged because I've slowly come to the realization that I AM middle-aged so I fit right in.
So back to Jim. He had written a note for me this morning, so here goes:
"Wow. Today started lousy. Depressed, tired, weak. It could definitely have been better. But Pam came over and showed me all the nice e-mails I've gotten so far. They were all exactly what I needed. Pam really hit a home-run with me on this one. She hit it exactly right on. With all the messages I read, it really lifted my spirits. Then one of the doctors came by to help me get used to eating again. I started doing better than I did the day before. It's going to take a long time. I have no illusion of anything else. I just have to keep up my spirits until this thing is done. Dr. David (I think) and his assistant were just here too. They said I look a lot better, and that with the tumor being SO big that they are surprised I'm doing so good. Another thing I just needed to hear. It's going to be hard to do, but I have to keep positive. No matter what I have to do."
So I'll explain a little here. When I got there he was still down in the dumps. I said, "Have you checked your e-mail? Everyone is e-mailing you." I coaxed him into checking it and brought it up on the screen for him. He half-heartedly puts his glasses on, and we start scrolling though them one by one. By the time we get halfway through, he's crying, them I'm crying, then the nurse walks by and thinks maybe his pain killers have worn off. Let me tell you guys....that was the best thing you could have done for him. I so, so appreciate it. Keep them coming. I can only keep him uplifted so much. It's like when your wife or husband says you look good, and you think, "Yeah yeah yeah....you're biased. You HAVE to say that because you're married to me," but when it comes from a third party you believe it more.
To top it off, right after we were through with that, in comes one of the otolaryngologists (that's eye, ear, nose and throat for those of you who just said, "WHAT?") with a cup of vanilla pudding. I thought Jim was going to tackle her to get that from her hand. The guy is just DYING for some real food. He tells her, "Can't I get a big piece of chocolate cake?" (So he's getting a little sense of humor back). She's come to work with him on learning how to swallow and not inhale. She shows him how to put a small amount in his mouth, then make a short cough to keep the food away from his windpipe, then swallow. Then he has to talk to her so she can hear if he's got any stuck in his throat. After a couple of tries he started to get the hang of it. So she has him alternating between ice chips and pudding. Tomorrow he goes for another swallowing study and we'll see if there's any improvement. They need to make sure he can take in 2000 calories a day on his own before they'll remove the feeding tube. They're still pumping him with steroids all day to try to get everything healed as quickly as possible.
So he finally got his catheter removed, and the strange-looking drain thing hanging out of his neck removed, and his stitches were taken out tonight. There's still about a dozen staples in his neck, the feeding tube, and an i.v., but at least he's down to just a handful of apparatus hanging off him now. He still has to hold onto this suction wand and use it every couple of minutes because he can't swallow his own saliva. But what really sucks now is he has another abcess in his tooth. Can you believe that? It would have been so nice if while they were in there they could have just taken the damn teeth out that started all this in the first place and gotten it over with, but que sera.
A couple of his buddies from high school are planning on driving up here to visit him. Jim started to give me some guff because he really doesn't want anyone to see him like this but I just yelled at him... "These guys are driving 300 miles to come and see you and they don't CARE what you look like. SHUT UP!"
Major thanks to a couple of people here who I won't mention by name because maybe they want to remain anonymous so I won't embarass them: To the person who made the arrangements to get my laundry picked up and washed (because you can only wash your drawers in a Miele), and the person picking them up for me, and the person washing them for me (gee- I really hope there's no skidmarks anywhere- maybe you'll want to wear some rubber gloves) YOU GUYS ARE THE BEST. And to the people who offered to get Jimmy and his parents up here to see Jim and were thinking about Jimmy's upcoming birthday...YOU GUYS ARE THE BEST TOO. Like I said in my e-mail...we love you all, and that's no bull. I've said it over and over again...one of the best things that ever happened in my life was that Thermador closed their Linden office and we all got laid off. Otherwise I would have never been here. Thank you to everyone who's been calling, and e-mailing, and getting me my mail so I can still get something accomplished....THANK YOU ALL!
My Mom called me this morning and is all over me to try and get in to see a cardiologist while I'm here, but of course all I hear is "blah blah BLAH blah BLAH...." Since when do I listen to anybody? I'd have to call Deborah Hospital in NJ to try and get a copy of my records, which is a feat in itself because those people don't hear a WORD you say, then I'd have to navigate the massive beaurocracy that is Lahey Clinic, and I think Jim and I will have grandchildren by the time I'd be able to get all that done. Hell, if I haven't had a heart attack yet that process will be sure to GIVE me one.
Oh, by the way....Did I forget to mention that I went to a bar the other night and sang with the band? It was a bar for the middle-aged because I've slowly come to the realization that I AM middle-aged so I fit right in.
So back to Jim. He had written a note for me this morning, so here goes:
"Wow. Today started lousy. Depressed, tired, weak. It could definitely have been better. But Pam came over and showed me all the nice e-mails I've gotten so far. They were all exactly what I needed. Pam really hit a home-run with me on this one. She hit it exactly right on. With all the messages I read, it really lifted my spirits. Then one of the doctors came by to help me get used to eating again. I started doing better than I did the day before. It's going to take a long time. I have no illusion of anything else. I just have to keep up my spirits until this thing is done. Dr. David (I think) and his assistant were just here too. They said I look a lot better, and that with the tumor being SO big that they are surprised I'm doing so good. Another thing I just needed to hear. It's going to be hard to do, but I have to keep positive. No matter what I have to do."
So I'll explain a little here. When I got there he was still down in the dumps. I said, "Have you checked your e-mail? Everyone is e-mailing you." I coaxed him into checking it and brought it up on the screen for him. He half-heartedly puts his glasses on, and we start scrolling though them one by one. By the time we get halfway through, he's crying, them I'm crying, then the nurse walks by and thinks maybe his pain killers have worn off. Let me tell you guys....that was the best thing you could have done for him. I so, so appreciate it. Keep them coming. I can only keep him uplifted so much. It's like when your wife or husband says you look good, and you think, "Yeah yeah yeah....you're biased. You HAVE to say that because you're married to me," but when it comes from a third party you believe it more.
To top it off, right after we were through with that, in comes one of the otolaryngologists (that's eye, ear, nose and throat for those of you who just said, "WHAT?") with a cup of vanilla pudding. I thought Jim was going to tackle her to get that from her hand. The guy is just DYING for some real food. He tells her, "Can't I get a big piece of chocolate cake?" (So he's getting a little sense of humor back). She's come to work with him on learning how to swallow and not inhale. She shows him how to put a small amount in his mouth, then make a short cough to keep the food away from his windpipe, then swallow. Then he has to talk to her so she can hear if he's got any stuck in his throat. After a couple of tries he started to get the hang of it. So she has him alternating between ice chips and pudding. Tomorrow he goes for another swallowing study and we'll see if there's any improvement. They need to make sure he can take in 2000 calories a day on his own before they'll remove the feeding tube. They're still pumping him with steroids all day to try to get everything healed as quickly as possible.
So he finally got his catheter removed, and the strange-looking drain thing hanging out of his neck removed, and his stitches were taken out tonight. There's still about a dozen staples in his neck, the feeding tube, and an i.v., but at least he's down to just a handful of apparatus hanging off him now. He still has to hold onto this suction wand and use it every couple of minutes because he can't swallow his own saliva. But what really sucks now is he has another abcess in his tooth. Can you believe that? It would have been so nice if while they were in there they could have just taken the damn teeth out that started all this in the first place and gotten it over with, but que sera.
A couple of his buddies from high school are planning on driving up here to visit him. Jim started to give me some guff because he really doesn't want anyone to see him like this but I just yelled at him... "These guys are driving 300 miles to come and see you and they don't CARE what you look like. SHUT UP!"
Major thanks to a couple of people here who I won't mention by name because maybe they want to remain anonymous so I won't embarass them: To the person who made the arrangements to get my laundry picked up and washed (because you can only wash your drawers in a Miele), and the person picking them up for me, and the person washing them for me (gee- I really hope there's no skidmarks anywhere- maybe you'll want to wear some rubber gloves) YOU GUYS ARE THE BEST. And to the people who offered to get Jimmy and his parents up here to see Jim and were thinking about Jimmy's upcoming birthday...YOU GUYS ARE THE BEST TOO. Like I said in my e-mail...we love you all, and that's no bull. I've said it over and over again...one of the best things that ever happened in my life was that Thermador closed their Linden office and we all got laid off. Otherwise I would have never been here. Thank you to everyone who's been calling, and e-mailing, and getting me my mail so I can still get something accomplished....THANK YOU ALL!
Monday, February 19, 2007
Monday February 19, 2007 7:31 PM
Well, I hoped to have better news today, but they wound up giving Jim a feeding tube this afternoon.
I got to the hospital in the early afternoon and he had just gotten back from his swallowing assessment. He did pretty well- it certainly wasn't hopeless. He can swallow somewhat but he only manages to get down about half of what he swallows- they rest goes down through the open larynx. They're going to give him two more days to heal a little more and then assess him again. They've been pumping him with steroids to try and hurry that process along. But when I got there he was now allowed to eat some ice chips, which he wasn't allowed to do yesterday. He looked so pitiful and deflated, though. And he's getting REALLY hungry. I asked him if since it was o.k. for him to have ice chips, couldn't he suck on an ice POP? At least that would taste a little more interesting than just plain water ice chips. So I was afraid to ask because they might have said no, and that didn't make any sense to me, so I ran down to the vending machines on the first floor and snuck one up to his room as contraband. I had to get him strawberry because the only choices were coconut, which he hates, banana, which he hates, and strawbewrry. I stuck it in a little cup and found him a plastic spoon and he spooned little bits into his mouth. At least he looked a little happier while he was doing that. I closed the curtain to his room so the nurses wouldn't see and if one came in we switched cups so it looked like I was the one eating the ice pop.
The doctor came in about an hour later and I confessed to what I had done. He was o.k. with it....just said try to get him a different color next time so they don't get nervous and think it's blood. Well, geez....if his blood loooks like the color of a strawberry ice pop he's got bigger problems than we thought he had.
The doctor asked him to stick his tongue out again and liked what he saw. And asked him to do a couple other things, which he liked, but decided to put the feeding tube in anyway. This was mostly because even though Jim can manage to get a small amount of liquid into himself, he's still inhaling too much and what he can get down is not enough to sustain him right now so he can build his strength up and try and get better. But Jim got so depressed after that, you could just see his shoulders slump and the little bit of life and hope he had in him yesterday was gone. Or maybe it was the morphine. But I think he's very depressed. He's still very sick but wants to go home, so he must be getting a LITTLE better. Usually when you start to get antsy that's a good sign of recovery.
So I excused myself and went out to the parking lot to have another breakdown (because you can't get a shred of privacy in that place- not even in the Chapel or the ladies' room- and I don't want Jim to see me like that), popped a Xanax, and came back in once it hit my bloodstream.
I hung around when they put the thing in, and took a whiff of the stuff they were giving him. It actually smells pretty good....like chocolate.
The guys that did the swallowing assessment said that they weren't going to release Jim until he can eat enough on his own for three to five days. Since they're not testing him for two more days, God ony knows when we're getting out of here. The doctor who did the surgery, however- the one who came in afterwards and made him stick out his tongue, etc- made me a little nervous. He just said he was going to have to come up with a "game plan". I sure hope that doesn't include Jim coming home with a feeding tube. Maybe he was thinking about the teflon thing. I didn't ask, because my mind was too numb at that point. I just want my husband back. And I want to go home, but WITH him- not by myself.
Before the feeding tube, Jim's speech was coming along pretty well, but now the damn thing interferes with his talking, so he can hardly talk at all now. And it's uncomfortable for him. And now the little bit of swallowing his WAS able to do is ten times more difficult with that damn tube in the way, so I don't know how he's going to practice excercising those muscles.
I'm also going to warn everyone that his voice will probably never be the same. Right now he sounds like a cross between Joe Pesci and someone with cerebral palsy.
He's been watching a lot of TV and getting bored, so maybe someone can drop him an e-mail. He did respond to a couple that he got. It's jimp1102@comcast.net. Maybe you guys can cheer him up a little, because short of me putting on a clown suit I'm out of options.
I got to the hospital in the early afternoon and he had just gotten back from his swallowing assessment. He did pretty well- it certainly wasn't hopeless. He can swallow somewhat but he only manages to get down about half of what he swallows- they rest goes down through the open larynx. They're going to give him two more days to heal a little more and then assess him again. They've been pumping him with steroids to try and hurry that process along. But when I got there he was now allowed to eat some ice chips, which he wasn't allowed to do yesterday. He looked so pitiful and deflated, though. And he's getting REALLY hungry. I asked him if since it was o.k. for him to have ice chips, couldn't he suck on an ice POP? At least that would taste a little more interesting than just plain water ice chips. So I was afraid to ask because they might have said no, and that didn't make any sense to me, so I ran down to the vending machines on the first floor and snuck one up to his room as contraband. I had to get him strawberry because the only choices were coconut, which he hates, banana, which he hates, and strawbewrry. I stuck it in a little cup and found him a plastic spoon and he spooned little bits into his mouth. At least he looked a little happier while he was doing that. I closed the curtain to his room so the nurses wouldn't see and if one came in we switched cups so it looked like I was the one eating the ice pop.
The doctor came in about an hour later and I confessed to what I had done. He was o.k. with it....just said try to get him a different color next time so they don't get nervous and think it's blood. Well, geez....if his blood loooks like the color of a strawberry ice pop he's got bigger problems than we thought he had.
The doctor asked him to stick his tongue out again and liked what he saw. And asked him to do a couple other things, which he liked, but decided to put the feeding tube in anyway. This was mostly because even though Jim can manage to get a small amount of liquid into himself, he's still inhaling too much and what he can get down is not enough to sustain him right now so he can build his strength up and try and get better. But Jim got so depressed after that, you could just see his shoulders slump and the little bit of life and hope he had in him yesterday was gone. Or maybe it was the morphine. But I think he's very depressed. He's still very sick but wants to go home, so he must be getting a LITTLE better. Usually when you start to get antsy that's a good sign of recovery.
So I excused myself and went out to the parking lot to have another breakdown (because you can't get a shred of privacy in that place- not even in the Chapel or the ladies' room- and I don't want Jim to see me like that), popped a Xanax, and came back in once it hit my bloodstream.
I hung around when they put the thing in, and took a whiff of the stuff they were giving him. It actually smells pretty good....like chocolate.
The guys that did the swallowing assessment said that they weren't going to release Jim until he can eat enough on his own for three to five days. Since they're not testing him for two more days, God ony knows when we're getting out of here. The doctor who did the surgery, however- the one who came in afterwards and made him stick out his tongue, etc- made me a little nervous. He just said he was going to have to come up with a "game plan". I sure hope that doesn't include Jim coming home with a feeding tube. Maybe he was thinking about the teflon thing. I didn't ask, because my mind was too numb at that point. I just want my husband back. And I want to go home, but WITH him- not by myself.
Before the feeding tube, Jim's speech was coming along pretty well, but now the damn thing interferes with his talking, so he can hardly talk at all now. And it's uncomfortable for him. And now the little bit of swallowing his WAS able to do is ten times more difficult with that damn tube in the way, so I don't know how he's going to practice excercising those muscles.
I'm also going to warn everyone that his voice will probably never be the same. Right now he sounds like a cross between Joe Pesci and someone with cerebral palsy.
He's been watching a lot of TV and getting bored, so maybe someone can drop him an e-mail. He did respond to a couple that he got. It's jimp1102@comcast.net. Maybe you guys can cheer him up a little, because short of me putting on a clown suit I'm out of options.
Sunday, February 18, 2007
Sunday February 18, 2007 2:18 PM
Whew! Went to see Jim today and he looks soooooo much better. If you guys saw him now you'd still say, "Man, you look like shit!" but he's a lot better-looking than he was. He was sitting up in his chair watching some alien junk on his TV. AND HE TOLD ME HE THINKS HE CAN SWALLOW A LITTLE BIT!!!!!!! He's also a little easier to understand when he tries to talk, so I got his Mom on the cell phone and he growled a couple of words at her and that made her so happy. She was crying on the phone.
Anyway, when I got there I saw he had written a page-long note, so I told him I'm going to post it on this blog. Here it is:
"The last thing I remember is going into the operating room. Nothing else. Apparently I don't remember anything for two whole days. Last night was a type of hell. The stuff in my lungs was bothering me a lot, and mostly I think because it's still hard to swallow. Two younger doctors came in to see me this morning and told me I am going for a swallow study on Monday. This will determine how long I'm here for. If the swallow-study goes good, then 3-5 days. They want to make sure I can walk and talk and eat on my own. This damn incision in my neck is probably the worst of it. It hurts, more annoying really- they give me pain meds for it every two hours so at least they know it freakin' hurts. The people are very nice, and everyone is very helpful.
Today, after I woke up, I got washed-up and was able to brush my teeth and clean up. That felt good. I miss my wife and Jimmy-Jam so much! That's what hurts so much. Not being able to see them is hurting. Anyway, Pam tells me the tumor was completely removed, so I think I just have to shut up and put up with whatever I need to do. I just hope I can get out of here soon. I'm starting to go nuts. I can't wait to go back home and lay in my own bed and hug my wife. I want that more than anything I can think of.
I keep testing my swallowing, and I think it's coming back- not perfect by any means, but I can feel it. I think this is the most important thing I need to accomplish. Everything else stems off of swallowing."
Well, I've got to do some work for Miele now. One of us needs a job. And commerce must go on. Hell, if Miele doesn't make any money who the hell is going to pay for my health insurance?
But one more thing before I go. I've noticed I'm starting to get to be one of those preachy people now...you know the kind that you like to tell to shut up all the time? But I have to say this: Eating and drinking is such an important part of life. Family gatherings center around it, holidays center around it, hell....it's probably all you think about when you haven't had any breakfast and it's 11:00 and you're wondering what you're going to get for lunch. Please, please, please people.....ENJOY EVERY MINUTE OF IT because the day may come when you can't do it anymore, and you take such a simple act for granted. We still don't know for sure if Jim will ever get this full ability back....I'm hopeful, but he's not out of the woods yet. So tonight, everyone, I want you to do something for me. Go out and get a pint of ice cream, and a BIG spoon, and eat the whole damn thing. Make sure you savor every single bite! Screw the diet! They make pants in bigger sizes. And o.k.- for those of you who are lactose intolerant, pick something else. It's not going to be worth the gas attack. Do it for Jim. Do it for me. And while you're enjoying every bite send a prayer up to God, Allah, Krishna, Mother Earth, or whoever it is you have faith in and thank them for giving you the ability to do it.
And I suppose everyone's wondering about Jimmy, too. Does he miss us? Sure. He spends all day telling Grandma how she's doing everything wrong because that's not the way that Mommy does it, and why doesn't she make grilled cheese like Mommy makes it, and my Mommy makes the best meatballs, Grandma, and that's not how my Mommy puts the dishes in the dishwasher, etc., etc., etc. Then every now and then he says he misses his Daddy, but then Grandpa takes him to Target and buys him something and that whole "I miss Daddy" thing goes right out the window. One good thing about being almost six...you have a very short attention span. This is your brain......"I miss Daddy....oh- I like this episode of Spongebob....I want some fruit snacks....can we have ice cream for dinner....I miss Mommy....buy me that tank Grandpa!...let's go to a movie....I really like Happy Feet....can I watch tv in bed Grandma?....do I really have to go to school?....Daddy and Mommy WHO?" When Jim's parents came over the day we left we barely got a goodbye. It was more like, when are the two of you going to get the hell out of here so I can exploit Grandma and Grandpa? In this whole week I think I got three words out of the kid on the phone. So I'm sure we miss him a whole lot more than he misses us. He'll need to be deprogrammed when we get back.
Anyway, when I got there I saw he had written a page-long note, so I told him I'm going to post it on this blog. Here it is:
"The last thing I remember is going into the operating room. Nothing else. Apparently I don't remember anything for two whole days. Last night was a type of hell. The stuff in my lungs was bothering me a lot, and mostly I think because it's still hard to swallow. Two younger doctors came in to see me this morning and told me I am going for a swallow study on Monday. This will determine how long I'm here for. If the swallow-study goes good, then 3-5 days. They want to make sure I can walk and talk and eat on my own. This damn incision in my neck is probably the worst of it. It hurts, more annoying really- they give me pain meds for it every two hours so at least they know it freakin' hurts. The people are very nice, and everyone is very helpful.
Today, after I woke up, I got washed-up and was able to brush my teeth and clean up. That felt good. I miss my wife and Jimmy-Jam so much! That's what hurts so much. Not being able to see them is hurting. Anyway, Pam tells me the tumor was completely removed, so I think I just have to shut up and put up with whatever I need to do. I just hope I can get out of here soon. I'm starting to go nuts. I can't wait to go back home and lay in my own bed and hug my wife. I want that more than anything I can think of.
I keep testing my swallowing, and I think it's coming back- not perfect by any means, but I can feel it. I think this is the most important thing I need to accomplish. Everything else stems off of swallowing."
Well, I've got to do some work for Miele now. One of us needs a job. And commerce must go on. Hell, if Miele doesn't make any money who the hell is going to pay for my health insurance?
But one more thing before I go. I've noticed I'm starting to get to be one of those preachy people now...you know the kind that you like to tell to shut up all the time? But I have to say this: Eating and drinking is such an important part of life. Family gatherings center around it, holidays center around it, hell....it's probably all you think about when you haven't had any breakfast and it's 11:00 and you're wondering what you're going to get for lunch. Please, please, please people.....ENJOY EVERY MINUTE OF IT because the day may come when you can't do it anymore, and you take such a simple act for granted. We still don't know for sure if Jim will ever get this full ability back....I'm hopeful, but he's not out of the woods yet. So tonight, everyone, I want you to do something for me. Go out and get a pint of ice cream, and a BIG spoon, and eat the whole damn thing. Make sure you savor every single bite! Screw the diet! They make pants in bigger sizes. And o.k.- for those of you who are lactose intolerant, pick something else. It's not going to be worth the gas attack. Do it for Jim. Do it for me. And while you're enjoying every bite send a prayer up to God, Allah, Krishna, Mother Earth, or whoever it is you have faith in and thank them for giving you the ability to do it.
And I suppose everyone's wondering about Jimmy, too. Does he miss us? Sure. He spends all day telling Grandma how she's doing everything wrong because that's not the way that Mommy does it, and why doesn't she make grilled cheese like Mommy makes it, and my Mommy makes the best meatballs, Grandma, and that's not how my Mommy puts the dishes in the dishwasher, etc., etc., etc. Then every now and then he says he misses his Daddy, but then Grandpa takes him to Target and buys him something and that whole "I miss Daddy" thing goes right out the window. One good thing about being almost six...you have a very short attention span. This is your brain......"I miss Daddy....oh- I like this episode of Spongebob....I want some fruit snacks....can we have ice cream for dinner....I miss Mommy....buy me that tank Grandpa!...let's go to a movie....I really like Happy Feet....can I watch tv in bed Grandma?....do I really have to go to school?....Daddy and Mommy WHO?" When Jim's parents came over the day we left we barely got a goodbye. It was more like, when are the two of you going to get the hell out of here so I can exploit Grandma and Grandpa? In this whole week I think I got three words out of the kid on the phone. So I'm sure we miss him a whole lot more than he misses us. He'll need to be deprogrammed when we get back.
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