I didn't post yesterday because there's not a lot that's new, but Jim's making some babysteps of progress. He's done a couple of chores around the house...I got him to fix the toilet paper holder in our bathroom that's falling off the wall. Yeah, I could have done it myself but Jim needs something to do. He's been doing some of his excercises that the speech and swallow pathologist gave him. He complained last night of tingling on the right side of his face but that's good...it means the nerves are waking up. He cracked open the laptop and three hard drives that the guys sent home for him to work on...he's moving slowly, but he's getting something done. He still sleeps entirely too much. I don't know if that's the depression or the drugs or the fact that he's still not taking in enough calories or a combination of all three, but we had a long talk today. I told him, look...I can't get you in to the shrink until early May. Does it suck to have a PEG tube? Yes, it does. But you have to keep remembering that it's only temporary. Do you need anti-depressants? Yeah, I'm sure you do, but until I can get you in to see the doctor you just have to find a way to work through it.
We have to go back to Boston next week for his follow-up visits and to get these little post things out of his stomach that are holding the PEG tube in place....they only stay in two weeks then they have to be removed. I'm going to call my shrink at Lahey and see if she can see him on Wednesday while we're there. Jim's still snappy and ornery which are real tell-tale signs of depression, but I've just got to keep putting up with it. One day he'll thank me for hanging in. He just can't see it yet. He actually believed that he'd have just two or three therapy sessions and he'd be cured, so I guess the apple doesn't fall far from the tree.
I had to go food shopping for the first time since we've been back because Jimmy and I still have to eat, although I'm not cooking much because what's the point? The kid doesn't eat a lot so it's really like cooking for myself. The shopping trip was a real downer for me because it just slapped me in the face that Jim can't eat. And the holiday is coming up but what's the point of us going anywhere or really doing anything? Holidays revolve around food. You can't put Jim at a table filled with food. That would just be torture. I've got a small ham here that my mother- in-law left in the pantry. I'm just going to glaze that and bake it for Jimmy and me and have a vegetable or a salad with it and call it a day. We did color Easter eggs today. Damn...hard boiled eggs in the fridge really stink. I told Jim, want to get over your craving for food? Smell the inside of the refrigerator.
He's still not up to six cans of liquid stuff a day. He says he gets a stomach ache from it. Tomorrow we're going to try supplementing his four or five cans with a little chicken boullion. It's liquid and maybe it won't bother his stomach as much. It will at least get a little more protein and water into him.
A couple of people have asked me how my heart thing is doing. Now that I'm on the beta blocker it's much better. The last few months my blood pressure had been all over the place...sometimes low, sometimes normal, sometimes high. Now my pulse is down to 80, my pressure's always normal, and the little "doodleoops" in the chest are almost gone. Not 100 percent, but almost. I've got a follow-up visit with Deborah Heart and Lung in early May. I'm never going to be able to undo the damage that was done from all those years of having a fast pulse, but at least I can stop it from getting worse. I never thought there was anything wrong with getting on the treadmill to work out and starting out with 120 bpm before you even move. Then I'd get it up to 190 or 200 and sustain that for an hour. Well, what did I know.
I hope everyone has a good Easter. Enjoy the chocolate bunnies and say and extra prayer that Jim gets to eat soon.
Friday, April 6, 2007
Wednesday, April 4, 2007
Wednesday April 4, 2007 9:21 PM
Okay, okay...I couldn't post yesterday because last night I just HAD to get my tax stuff together for my accountant, which thankfully went out to him today.
Jim's had two more therapy visits, and Beth says he's making great progress. It's very interesting how the therapy is done. The electrodes get strapped onto his neck and she turns up the "volume" until he can't stand it anymore. After about a minute he feels the muscles stretching, and then she cuts a tongue depressor in half on an angle so it forms a point on one end, and she pokes his palate with it. When he leaves therapy his voice is deeper and stonger, but that fades shortly thereafter. Today, though, I've noticed that it's stayed a little stronger. His voice is very "wet" if anyone understands that. Since he can't manage his own saliva, when he talks it sounds like he's talking under water, and he has to clear his throat all the time to be understood. Since his vagus nerve was cut he also can't move his tongue like the rest of us can, so that affects his speech as well. But today he graduated to being able to drink spoonfuls of water. We all pick up a bottle of water on a regular basis and just drink it down whenever we're thirsty. Imagine not being able to drink anything...how dry would your mouth get? Just thinking about not being able to drink anything would make me feel dry.
We found a new primary care physician and he had his first visit there. It's a woman just around the corner from the house...Dr. McAndrew. She listened to his lungs and said his pnemonia is clearing up nicely. Now that he's feeling a little stronger he can drive himself around, and he's a little more mobile. He's still tired all the time, but he's sleeping better because he's not coughing and spitting all night. He's also cold all the time and constantly has a blanket wrapped around him. I think that's just because he's missing 40 pounds of flesh that used to be there.
I got my money refunded from the $1600 antibiotic. Turns out it wasn't a case of not being covered, it just needed to be precertified (which is a LOT different than "It's not covered, (roll eyes here) do you still want it?" along with a tongue click and hand on the hip from the CVS employees), so Aetna told me if the doctor backdated the pre-cert to last Friday I could go back to CVS and get refunded, which I did. My in-laws had offered to give us the money if I couldn't get it back, but I told them never mind. When the bills for four surgeries and seven weeks in the hospital start pouring in, then we might be having a different conversation. For right now, we're o.k. So the same pharmacist was working in CVS tonight when I went in for the refund and everyone that knows me KNOWS that I said something when I was there. I didn't go into it too deepy here for the sake of time, but she was REALLY a giant snot-rag the other day. I picked up a refill of my crazy meds at the same time, so watch out....here comes crazy chick.
And yes, I'm still all over Jim to use his "food" and take his meds and get enough water into the PEG tube, blah blah blah. And that's exactly the look he gives me...like all I'm saying is "blah, blah, blah". I'm working as hard as I can to keep him alive for everyone. The day he can eat he'll apologize and thank me. Until then I just get abuse. But this Trileptal I'm taking makes it impossible to get upset about anything. I've got good reason to be upset, I've even TRIED to get upset thinking that might release some tension for me, but nope- can't do it. I got another cute e-mail from my step-sister tonight and it had a line in it that is really apropos to what's going on in my house right now: Dear Lord, I pray for wisdom to understand my man, love to forgive him, and patience for his moods, because, Lord, if I pray for strength, I'll beat him to death. Amen.
In the meantime, he's got some Miele work to do that doesn't involve speaking much so I'm hoping that will help get him out of his rut.
Jim's had two more therapy visits, and Beth says he's making great progress. It's very interesting how the therapy is done. The electrodes get strapped onto his neck and she turns up the "volume" until he can't stand it anymore. After about a minute he feels the muscles stretching, and then she cuts a tongue depressor in half on an angle so it forms a point on one end, and she pokes his palate with it. When he leaves therapy his voice is deeper and stonger, but that fades shortly thereafter. Today, though, I've noticed that it's stayed a little stronger. His voice is very "wet" if anyone understands that. Since he can't manage his own saliva, when he talks it sounds like he's talking under water, and he has to clear his throat all the time to be understood. Since his vagus nerve was cut he also can't move his tongue like the rest of us can, so that affects his speech as well. But today he graduated to being able to drink spoonfuls of water. We all pick up a bottle of water on a regular basis and just drink it down whenever we're thirsty. Imagine not being able to drink anything...how dry would your mouth get? Just thinking about not being able to drink anything would make me feel dry.
We found a new primary care physician and he had his first visit there. It's a woman just around the corner from the house...Dr. McAndrew. She listened to his lungs and said his pnemonia is clearing up nicely. Now that he's feeling a little stronger he can drive himself around, and he's a little more mobile. He's still tired all the time, but he's sleeping better because he's not coughing and spitting all night. He's also cold all the time and constantly has a blanket wrapped around him. I think that's just because he's missing 40 pounds of flesh that used to be there.
I got my money refunded from the $1600 antibiotic. Turns out it wasn't a case of not being covered, it just needed to be precertified (which is a LOT different than "It's not covered, (roll eyes here) do you still want it?" along with a tongue click and hand on the hip from the CVS employees), so Aetna told me if the doctor backdated the pre-cert to last Friday I could go back to CVS and get refunded, which I did. My in-laws had offered to give us the money if I couldn't get it back, but I told them never mind. When the bills for four surgeries and seven weeks in the hospital start pouring in, then we might be having a different conversation. For right now, we're o.k. So the same pharmacist was working in CVS tonight when I went in for the refund and everyone that knows me KNOWS that I said something when I was there. I didn't go into it too deepy here for the sake of time, but she was REALLY a giant snot-rag the other day. I picked up a refill of my crazy meds at the same time, so watch out....here comes crazy chick.
And yes, I'm still all over Jim to use his "food" and take his meds and get enough water into the PEG tube, blah blah blah. And that's exactly the look he gives me...like all I'm saying is "blah, blah, blah". I'm working as hard as I can to keep him alive for everyone. The day he can eat he'll apologize and thank me. Until then I just get abuse. But this Trileptal I'm taking makes it impossible to get upset about anything. I've got good reason to be upset, I've even TRIED to get upset thinking that might release some tension for me, but nope- can't do it. I got another cute e-mail from my step-sister tonight and it had a line in it that is really apropos to what's going on in my house right now: Dear Lord, I pray for wisdom to understand my man, love to forgive him, and patience for his moods, because, Lord, if I pray for strength, I'll beat him to death. Amen.
In the meantime, he's got some Miele work to do that doesn't involve speaking much so I'm hoping that will help get him out of his rut.
Monday, April 2, 2007
Monday April 2, 2007 9:59 PM
Jim had his first session with the therapist. I had to take him because he's still very weak and I don't trust him driving a car, and he had no idea where this place was and can't punch his way out of a paper bag so he needed to be shown the location. This woman apparently has a very good reputation. The nurses at Kennedy had heard of this place and said to make sure you get Beth because she's the best. Jim's got Beth. She did a lot of measurements and assessments today...like having him say different syllables with this tube up his nose to see if his palate is blocking air from going up into his sinuses (which it does when he says the letter "a" but nothing else)...how much can he open his mouth...can he roll his tongue across his upper lip...all kinds of stuff. Then she told him he has to shave the hair off his neck because she can't use the electrodes on hairy skin. She warned him that she's going to work the hell out of him and he's not going to like it. She needs to see him three days a week for an hour a day. He'll probably be enthusiastic for a couple of days but then he'll start bitching to me I'm sure. She had some good ideas to bring up with his new doctor (because we fired the old one) about how he probably has fluid in his ears because his saliva is getting into his eustachian tubes due to his swallowing issues. He may need to get tubes in his ears like the little kids get. Tomorrow starts the electrodes and the real work.
Tonight I got him to come with me and Pop-pop Joe to Jimmy's Little League practice. He rolled his eyes at me all day about it but in the end he went. I wanted him to come for a couple of reaasons: 1) Jimmy would like his Dad there and 2) I wanted him to meet the guy that was in the car accident and is now wheelchair bound but was able to get rid of his peg tube after therapy. I saw the wife pushing him across the field with some difficulty because she had the dog in tow. I told Jim...."That's the guy"...and Jim went over and helped her push the chair. Here's Jim, very frail- he's down to 153 lbs because he actually got on our scale this morning. He's getting a little scary looking, but he's managing to push the chair. This woman's husband went for therapy somewhere in Philadelphia. Jim actually picked up his shirt and showed them his tube. The wife said, "Don't worry- you'll get rid of it."
He's still depressed and not using all of the food he's supposed to. My mother's yelling at him...his mother's yelling at him...but it's not going to do any good. You can't yell at him because he has to WANT to do it for himself. So I try to reason with him. I try to come up with some line that will make the lightbulb go on in his head. Tonight I tried reminding him of how hard he fought through all those surgeries, and what was it for if he won't follow through with what he needs to do now? I've already tried the "if you won't do it for yourself, do it for me and Jimmy" line but that didn't work. He's got a shrink appointment for early May...it was the soonest I could get him in, but I may have to take more drastic action than that.
And guess who called me today....Miss Dingledong! But someone must have had a talk with her because she had a lot more sense in her head today. Ingrid and I had a bitch session a couple of weeks ago and she contacted some big Dude on the food chain...I don't quite remember what his position was. Miss Dingledong actually claims she's going to check into the $1600 medication that didn't get covered- to give her a couple of days on that, the possibility of getting Jim's tube feed "stuff" covered, and she had an intelligent conversation with me today about the hotel reimbursement. She spoke with Jim's endocrinologist last week. So I guess we're moving along. I never expected a quick answer out of these people. If it takes awhile to get it together, that's o.k., just don't jerk me around.
Tonight I got him to come with me and Pop-pop Joe to Jimmy's Little League practice. He rolled his eyes at me all day about it but in the end he went. I wanted him to come for a couple of reaasons: 1) Jimmy would like his Dad there and 2) I wanted him to meet the guy that was in the car accident and is now wheelchair bound but was able to get rid of his peg tube after therapy. I saw the wife pushing him across the field with some difficulty because she had the dog in tow. I told Jim...."That's the guy"...and Jim went over and helped her push the chair. Here's Jim, very frail- he's down to 153 lbs because he actually got on our scale this morning. He's getting a little scary looking, but he's managing to push the chair. This woman's husband went for therapy somewhere in Philadelphia. Jim actually picked up his shirt and showed them his tube. The wife said, "Don't worry- you'll get rid of it."
He's still depressed and not using all of the food he's supposed to. My mother's yelling at him...his mother's yelling at him...but it's not going to do any good. You can't yell at him because he has to WANT to do it for himself. So I try to reason with him. I try to come up with some line that will make the lightbulb go on in his head. Tonight I tried reminding him of how hard he fought through all those surgeries, and what was it for if he won't follow through with what he needs to do now? I've already tried the "if you won't do it for yourself, do it for me and Jimmy" line but that didn't work. He's got a shrink appointment for early May...it was the soonest I could get him in, but I may have to take more drastic action than that.
And guess who called me today....Miss Dingledong! But someone must have had a talk with her because she had a lot more sense in her head today. Ingrid and I had a bitch session a couple of weeks ago and she contacted some big Dude on the food chain...I don't quite remember what his position was. Miss Dingledong actually claims she's going to check into the $1600 medication that didn't get covered- to give her a couple of days on that, the possibility of getting Jim's tube feed "stuff" covered, and she had an intelligent conversation with me today about the hotel reimbursement. She spoke with Jim's endocrinologist last week. So I guess we're moving along. I never expected a quick answer out of these people. If it takes awhile to get it together, that's o.k., just don't jerk me around.
Sunday, April 1, 2007
Sunday April 1, 2007 7:12 PM
I got him to actually SHOWER today, and as of 7 pm he's up to four cans of "food". He promises to get one more in before bed, so we're close to what he's supposed to do. He still needs to do more breathing treatments than he's doing. He's savoring that last italian ice in the freezer. I made a deal with him...you follow the doctors' instructions and I'll get you more italian ice. He did a couple of little chores the last couple of days, so at least he's getting up and around somewhat.
Tomorrow's his first Vital Stim therapy appointment. He was doing some research on it today and according to Vital Stim, the therapy works in about 70 percent of cases and the average number of visits to get your swallow back is 14. There was a testimonial video from a guy who lost 100 lbs before he got his swallow back. Of course, Jim is using this as some kind of justification....see, that guy lost 100 lbs! Well, I told him, you don't have 100 lbs to lose! Jim's Dad doesn't seem to get it. He doesn't understand that this is therapy...it will take time. He calls me tonight and says, "I hope he gets good news tomorrow." For the umpteenth time I told him, listen, the Walton's Easter Miracle is only on t.v. He's not going to walk in there tomorrow and they say, "Oh, Mr. Primiani- you're cured! Here's a pizza!"
Tomorrow's his first Vital Stim therapy appointment. He was doing some research on it today and according to Vital Stim, the therapy works in about 70 percent of cases and the average number of visits to get your swallow back is 14. There was a testimonial video from a guy who lost 100 lbs before he got his swallow back. Of course, Jim is using this as some kind of justification....see, that guy lost 100 lbs! Well, I told him, you don't have 100 lbs to lose! Jim's Dad doesn't seem to get it. He doesn't understand that this is therapy...it will take time. He calls me tonight and says, "I hope he gets good news tomorrow." For the umpteenth time I told him, listen, the Walton's Easter Miracle is only on t.v. He's not going to walk in there tomorrow and they say, "Oh, Mr. Primiani- you're cured! Here's a pizza!"
Sunday April 1, 2007 10:16 AM
I really had it out with Jim yesterday. He still wouldn't shower, and he's not doing all of the things the doctors told him to do. He's supposed to use at least six cans of his liquid food a day. He only used three yesterday, and even that's debatable because I think he's fibbing and only used two. He's got a little excercise that he's allowed to do with italian ice but he's not doing it right and the italian ice is taking away from his using more food, so I've refused to buy him anymore of them. He can do the same excercise with ice chips, so let him do it that way. He was supposed to do six breathing treatments yesterday: two with the sulfur and four with the albuterol and he only did two with the albuterol. At least he's taking his medication, and at almost $100 a pill he'd better. He claims the super anti-biotic knocks him on his ass, and I believe that because it's got to be strong as hell, but he'll never recover if he doesn't get in enough calories...three cans is only around 1000 calories and no one can live on that for a long time.
So we had a long talk last night. I asked him if he wanted to die. Of course not, he said. Well, he'd better start following instructions or he will die. He promises to turn it around. We'll see.
In the meantime I'm still having to deprogram Jimmy from his six weeks of being spoiled by Grandma and Grandpa and it ain't easy. Plus having to do all of the chores around the house is starting to take a toll on me. I'm beat and overwhelmed. Maybe it's time for a cleaning lady. And I haven't gotten my stuff together for taxes yet, because I never expected to be in Boston so long. I have got to get it together today.
So we had a long talk last night. I asked him if he wanted to die. Of course not, he said. Well, he'd better start following instructions or he will die. He promises to turn it around. We'll see.
In the meantime I'm still having to deprogram Jimmy from his six weeks of being spoiled by Grandma and Grandpa and it ain't easy. Plus having to do all of the chores around the house is starting to take a toll on me. I'm beat and overwhelmed. Maybe it's time for a cleaning lady. And I haven't gotten my stuff together for taxes yet, because I never expected to be in Boston so long. I have got to get it together today.
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