| Author | Message | ||
     mjh Supporter Username: Mjh Post Number: 224 Registered: 5-2001 |
Cynicalgirl I second the suggestion that using a peg (a tube directly to the gut)for feeding Curt is preferable to TPN if it's possible in his case. TPN is very complicated and can be dangerous if not managed carefully. Infection of the line is a serious worry (all the sugars in TPN are delicious to any bacteria that happen to enter). If the line gets infected, not only is it dangerous for him, but the line would have to come out and be replaced. I realize that there is a delicate balance here........he can't eat and something has to be done. The risks and benefits have to be weighed. I just encourage you to find out if he could be fed thru the gut rather than a vein........infinitely safer if he can tolerate it. Good luck with all............You and Curt are on my mind. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1842 Registered: 9-2003  |
Well, given that the spot where the renewed cancer was was the stomach, I have my doubts! For me, I'd rather he got his appetite up and went without any of that folderol. But, we shall see...Thanks for the info guys! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1843 Registered: 9-2003 |
Well, now he eats and their counting his calories. I'd brought in squirt cheese and Ritz, a couple of those Campbell's "soups to go" things. Ate 'em. He ate modestly the last 2 days but definitely ate. I'll bring in more stuff tonight, which supplements his hospital offerings. A physical therapist was in to walk him -- with walker for support -- around the floor. Pooped him out, but worked. I must say, you guys have me righteously nervous about TPNs, pegs and all the rest of it. I really want him on some manner of appetite enhancer. Past experience would suggest that (1) he's gonna be eager to leave the hospital, and (2) the doc will be eager to have him leave the hospital. My only concern with that is him coming home with either apparatus or not quite a total willingness to do what he must. I'm going to call the doc today to get his sense of progression -- and remind him that Curt will need to be home during the day -- read 7:20 a.m till 6:10 p.m. -- alone and see what's possible here. Don't need no stinkin' relapses much as I look forward to him being home. I have maybe 2 vacation days left. I'm doing FMLA paperwork, but that just gets me permission to take unpaid days. In fairness to where I work, my schedule this year has been rife with unpredicatabilities and time away. Let's not even get to my consciousness when there at times. So, I got concerns! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1845 Registered: 9-2003 |
I'm hoping greenetree will chime in here but I think she's en vacance... Talked to the doc and some social worker today, who portrayed a readier-to-go-home Curt than I saw tonight. So, tomorrow I do battle with his caseworker at Aetna, call the doc etc. "Pretend he lives alone" is basically what I want to say. He will need an lpn type to come daily for a time to insure taking medicine, help with ostomy. He's very weak. He cannot get meals for himself. He's himself personality-wise but even he says he can't be all along for 11 hours. Left a long note to the doc etc. on this. He either needs daily support of 2 kinds at home twice a day, or he needs to go to a rehab/nursing home like place for a week or so. I'm powerfully afraid they will try to discharge him to soon and I am not blowing smoke when I say I cannot stay home. I'll just tell them I refuse to pick him up until they arrange appropriate plans. I know that sounds harsh but I am so fukked you wouldn't believe in terms of vacation time etc. So, eating a Stouffer's dinner and drinking some wine... | ||
| Debby Citizen Username: Debby Post Number: 2048 Registered: 5-2001 |
I think you need to make continual references to it "not being safe". Your convenience/employment means nothing to them. But I'm thinking that if you go on record about fear for his safety at home alone, the social worker will not want to sign the discharge. Aargh. Good luck. I'm pulling for you. BTW - at my dad's skilled nursing facility I saw several younger people there for various reasons. Though it's not the most life-affirming arrangement, it very pleasant and the care is excellent (He's at Frances Schervier Home & Hospital, in Riverdale) | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1846 Registered: 9-2003 |
Thanks, Debby. I talked to a collegue at work who used to work for a medical insurer. My basic question was this: Why would the insurer be so short sighted as to accept a hospital discharge of a patient who will just wind up back there should he not get the care he needs when home? That's got to be more expensive, by a lot. He gave me an elaborate explanation involving what amounts to the capitation arrangements made with each piece of the medical equation: the medical group, skilled care organaizations, etc. It's obviously all ends against the middle. It's in our medical group's interests to NOT incur "excessive" hospitalization. It's in the at-home care organization's interest to supply the minimum. Etc. Overall, I should think the insurer should want to reconcile these to get the patient well through the cheapest means possible, in this case, at home care. Or, we get a vicious cycle of return via emergency room. So it would seem, in dollars in sense. Too, if the patient dies, they get less money cuz I reduce my plan. Oh, well! No one's talking about going home with TPN or peg, at least. But I need to see more self-care going on... | ||
| mjh Supporter Username: Mjh Post Number: 227 Registered: 5-2001 |
Stick to your guns Cyn. He's not safe and cannot take care of himself. Period. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1848 Registered: 9-2003 |
QUICK!!! The doc and the hospital caseworker concur and are checking on "subacute care" places near by. What's the name of that place on Sprinfield Ave near Home Depot, or something similar nearby that Aetna might take. He is not coming home today for the reasons I cited, but it's in my interests to come up with a likely facility...names? numbers? thanks a bunch... | ||
| las Citizen Username: Las Post Number: 462 Registered: 10-2003 |
SOUTH MOUNTAIN HC 2385 SPRINGFIELD AVENUE VAUXHALL, NJ 07088 (908) 688-3400 Order Report Listing by county: http://www.carepathways.com/nhg-state-NJ.cfm | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1852 Registered: 9-2003 |
Thank you, Ms. las! All squared away. Curt will go to the above place for a minimum of 2 weeks, probably Sunday. He can leave sooner if up to it, or stay longer if needed. The Aetna Complex Case Manager was great! | ||
| las Citizen Username: Las Post Number: 468 Registered: 10-2003 |
Fantastic! Great news on this most beautiful day. | ||
| Joan Supporter Username: Joancrystal Post Number: 6369 Registered: 5-2001 |
Cynicalgirl: I'm sorry that Curt has reached the point where he needs a nursing home but it is good news that he is well enough to leave the hospital and that you were able to find a good nursing home so close to home. Glad that Aetna was able to work with you to make the arrangements so quickly. Please post visiting hours and if/when Curt is up to company. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1857 Registered: 9-2003 |
Curt would LOVE company. Hours there seem to be 8 a.m. to 8 p.m. PL me if you want his room info -- phone. I have 2 main concerns about this or any such place: I suspect the food will not be enticing, and until he's perkier, I am concerned about isolation and nurses etc. not stopping in so much. Ergo, if any of you have a mind to visit or call, lemme know and I'll give the necessary. Yep, he needs built up in all respects. Still pretty limp and washed out. I'm sure it will be 2 weeks anyway, but he also needs outer world connection... Thanks to all. | ||
| greenetree Supporter Username: Greenetree Post Number: 5426 Registered: 5-2001  |
I'm so sorry that I wasn't around when this hit. This is just like mom's situation. We got her into rehab because she couldn't walk very far. Aetna did not care that she lived alone. Alternate Plan B was that the visiting nurse would come once a day to help her "manage" her infusion. She was covered for one visit a day, up to four hours. But, they would only stay as long as needed to check vitals, the TPN line, etc. Check Curt's criteria for the SNF. With mom, they wanted her out when she could ambulate 125 feet. Which she could before she was off the TPN. So, it's critical that he start eating, whether he wants to or not. The ultimate goal is that he is off TPN before his SNF days are used up. No pressure there, right? I also used the "cheaper than hospital" argument with Aetna. They are basically willing to gamble that there won't be an infection or reason to send him back to the hospital and, since home therapy is even cheaper than a SNF, that's what they want. BTW - have you specifically asked about his home infusion benefits? Just in case. No one offered me that info; I had to play 20 questions with them to get it. Has Curt been enrolled in Aetna case management? This is where it becomes helpful. They even get social workers involved who can help with community-resource things. Oh - one pint of vanilla Haggen Dasz has 1000 calories, which is the minimum mom was told to consume daily. Also, try putting the bowl of good candy in his room so that the staff pops in during the day. You are right; they don't tend to check as often in SNFs as in acute care. FWIW, this is the part where you can't imagine that it will ever get better or that he will ever come home or be back to himself. He will. It's just impossible to see in the midst of all this crap. Now I will post and see whether the word "CRAP" makes it past Queen Victoria. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1858 Registered: 9-2003 |
Hey, greenetree! Good to hear you way in... Yep, he has a Complex Case Manager at Aetna, who I actually like. It was she who got him approved for an initial 2 weeks at the South Mountain HC (conveniently located next to Home Depot). He's not on TPN right now as he ate enough calories at the hospital. I just came from there, where I brought him an array of breakfast stuff from Park Wood Diner. I'm a little crabby right now as I got him to eat some bits and pieces of all of this, and he'd had some bits and pieces of their waffle earlier. Rolled him via wheelchair into the bathroom to wash hands, face, see to some bodily functions. We made some messes together but I cleaned them up. He's on Megase, for which I'm glad as in the past that revived appetite. His vitals are all good. He is, however, extremely exhausted and old man like and I believe depressed. When he gets more formally evaluated Monday I am going to push for anti-depressants. He has no mouth sores or any of those things in the way of eating. He is, however, so like my dad was, so like my grandmother was with this whole exhausted all food tastes bad. And let's not forget my 2nd husband-the-depressive-suicidal-guy-who-finally-got-it-together. I HATE CAREGIVING! At this point, I do think depression is playing a role. Today, yeah I'm crabby and discouraged and not counting my blessings much. If I had my druthers, a tall strong humorous man would take me out for a great steak dinner, with a salad with blue cheese, some fine red wine, a cigar and he'd tell me how wonderful I am. I'm feeling exhausted, put upon, and the my entire background of taking care of the halt, the schizophrenic, the tired and the sickly is crashing down upon me and MAKING ME FREAKIN'MAD!!! Too much of my life has had a mess of self-sacrifice for the certifiably sickly and I think the rubber band that is my psyche has max stretched. My best friend from Delaware, who is also Curt's great friend, is coming up today and will go spend quality time with him. She is dear, utterly unjudgemental and has been through a lot of Hades herself so I greatly look forward to this. I'm not so nice sometimes...and I'm sick to heck of being a cheerleader....at the same time, I know that as soon as I clean up this house, and by the very act of expressing my anger, I will come back to a more generous spirited and loving place. Sometimes a cigar is just a cigar... | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1859 Registered: 9-2003 |
(don't anyone go thinking I'm gonna go off an have an affair, btw. I love my husband dearly, and besides I'm too fat, need the hairdresser and some stuff waxed...) | ||
| las Citizen Username: Las Post Number: 469 Registered: 10-2003 |
Hey, Cyn - compared to you I'm not tall, I'm a woman, I don't smoke and I prefer white wine, but I can lay it on pretty thick, so how's about a steak dinner next week? ps: no need to get yourself waxed on my account  | ||
| Joan Supporter Username: Joancrystal Post Number: 6381 Registered: 5-2001 |
Does Curt have any art supplies with him at the nursing home? Is he stong enough to hold a pencil? Even a sketch pad a few sharpened pencils could enable to express some of his frustration using his art. This could help counter at least some of his depression. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1860 Registered: 9-2003 |
Thank you, las and Joan. Yep, he's got art stuff but he's not quite there yet. las, may take you up on that. Let's see how the week progresses. Just got back from there. He called our slumber party (my friend, her 19 yr old daughter, my daughter and me) at 6:30 a.m. cuz he didn't understand something to do with his ostomy stuff. So, I'm a bit tired and crabby right now. My friend is making breakfast while I get my self oriented/together...I got a bunch to do today, including a report for work. z-z-z-z-z-z-z-z-z-z-z.....! | ||
| Tom Reingold Supporter Username: Noglider Post Number: 9746 Registered: 1-2003  |
You're not fat, Cyn. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1865 Registered: 9-2003 |
HEY! Start spreadin' the news... His appetite is back today... He's gonna be a part of it etc. etc. Been busy going to the nursing home. He had zip appetite, scarcely walking. Miraculously he woke up today and food tasted NORMAL! He walked the full length of the building, went into their library and brought back some books. We just came from eating pizza and coke with him. I am so FREAKIN' RELIEVED!! At this rate, I'd think he'll be home soon. (the only thing I think about is what's next with the onco...hopefully endoscopy and PET scan saying none left and so let's do some chemo but not so rad) HE WAS HIMSELF! HE ATE FOOD! WE WATCHED SEINFELD! HE MADE CHAIR DANCING MOVES WITH OUR KID! | ||
| wendy Supporter Username: Wendy Post Number: 1712 Registered: 5-2001 |
What absolutely wonderful news, Cynicalgirl. You know today was the second day of Rosh Hoshana and I mentioned Curt in the Misheberach (sp?) prayer for the ill. It felt like the right thing to do. Hope to visit him again by the end of the week. Again, wonderful news. Wendy | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1867 Registered: 9-2003 |
Y'know Wendy, I thought of you during this. I am pretty ignorant of the meaning of Roshashana, and when you mentioned "Days of Awe" I wasn't sure what that meant but I was struck by the phrase. I am more than grateful and willing to believe that your prayer made the difference. Thank you... | ||
| bets Supporter Username: Bets Post Number: 22428 Registered: 6-2001  |
Great news, Cynicalgirl! I hope Curt is home soon. | ||
| Bailey Citizen Username: Baileymac Post Number: 20 Registered: 3-2005 |
Hope this is just the beginning of many blessings to come Cyn! | ||
| Tom Reingold Supporter Username: Noglider Post Number: 9834 Registered: 1-2003 |
I'll bet it is! | ||
| CLK Supporter Username: Clkelley Post Number: 1484 Registered: 6-2002  |
Cynical, we're pulling for you & Curt. Really glad he's eating well again. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2624 Registered: 9-2003 |
Great news Cyn.. really great. All good things to you and yours! | ||
| las Citizen Username: Las Post Number: 476 Registered: 10-2003 |
Pizza and Coke and Seinfeld? How utterly mundane and normal! ...and I couldn't be happier for the entire Cyn family. Such great news even my insides are smiling. | ||
| greenetree Supporter Username: Greenetree Post Number: 5477 Registered: 5-2001 |
 What a friggin' ride. How great! A Happy New Year, indeed! | ||
| mjh Supporter Username: Mjh Post Number: 231 Registered: 5-2001 |
I was thinking on the way to work this morning that I wanted to post a "Where's Cyn and how's Curt"?..........I get worried if you are gone too long I guess. Great news! | ||
| Eats Shoots & Leaves Citizen Username: Mfpark Post Number: 2375 Registered: 9-2001  |
Wonderful news, Cyn, so happy for you and Curt. Made my day to read this. Here's hoping the endoscopy and PET come up clean and you and Curt and Little Cyn can keep moving forward with the healing--physical, spiritual, psychological. | ||
| CLK Supporter Username: Clkelley Post Number: 1488 Registered: 6-2002 |
Cynicalgirl, Do you guys, Curt especially, like apple crumble? I have a lot of apples because we went apple picking this weekend. (like, two of those baskets they give you - half bushels I think) If you want some, I'll make it and drop by your house (with your book!). I can put in extra butter, sugar, etc. the better to fatten him up. I'd offer a pie but I'm hopeless with pastry. Crumble is a specialite de la maison CLK. No offense taken if it's not your/his fave. | ||
| Virtual It Girl Citizen Username: Shh Post Number: 3290 Registered: 5-2001 |
Great news Cyn! Our thoughts are with all of you. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1871 Registered: 9-2003 |
Apple Crumble, CLK? Mais oui! Curt loves apple pie or crumble and all their relatives...when his mouth/appetite wasn't bugging him this summer, and he didn't have sensitivity to cold, apple pie from King's plus ice cream was his fave mainstay... Went in last night bearing cheeseburgers from Jay's. Had a nice little time. His good friend from Delaware is to come up today and spend time with him. That'll be good. Curt's agitating to come home, which I'm hoping they'll say is Monday. He's still weakish, but walks about. Would need walker for a bit till stronger. But, eating, sleeping alla that good stuff. Right now, up early to put buckets under leak in upstairs bath due to ceiling drip. Get Liquid PlumR hairclog for some drains, and so on and so forth. Kid at a sleepover so all quiet on the western front (except for Curt's yowling cat)... Thanks for all good wishes, guys. In the morning, I find myself humming/mumbling Elvis's "This time, Lord, you ga-a-ve me a MOUNTAIN...." medlayed with Julie Brown's silly song "Will I make it through the 80's, sha-la-la-la-la..." She's the girl singer who did the novelty hit, "Everybody run, The Prom Queen's got a gun..." | ||
| CLK Supporter Username: Clkelley Post Number: 1498 Registered: 6-2002 |
OK, you're on! Crumble tonight (if I get my act together) or tomorrow at the latest. Making one for myself anyway - just as easy to pop two in the oven. (and we have all these apples, you see .... ) | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2634 Registered: 9-2003 |
Some days are just gifts. Yesterday we attended the baptism of our great-nephew, born on my BIL's (his grandfather's) birthday. BIL was there, looking and feeling better than he has in the past few months. He sat with us at the "after baptism luncheon" and ate well, laughed and enjoyed the blessing of feeling good and being surrounded by his family. He'll have the new scan soon to see if the tumor has shrunk to an operable size and we know there's still some mightily tough roads ahead.. but... we still thank God for small gifts and blessings.. yesterday counting amoung them. | ||
| greenetree Supporter Username: Greenetree Post Number: 5513 Registered: 5-2001 |
Yep. Yesterday was the first time since February that I didn't call mom. The day just got away. She's been feeling very good and happy. Who knew that not calling would be a good thing? GMF is up to her old tricks again. Mom is up to 116 lbs. She still needs to gain weight so that if (when) things hit her again, she'll have the cushion to lose. GMF is nagging her about staying just as she is. She "looks good". My mom can carry off being a size 6, but looks thisshy of being emaciated. So, to torture her, I told GMF that mom's doctors told her to gain 25 pounds.  GMF was sputtering about long-term heart disease if mom "gets fat" again. Give me a break. She then said her usual "don't you get fat" to which I replied my usual "I already did" to which she said "well, I wasn't going to say anything" to which I said "how is that not saying something? You always manage to bring up my weight and how you 'don't say anything"? She had to get off the phone after that. She's going to outlive us all...... | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2635 Registered: 9-2003 |
"She's going to outlive us all......"  yea.. I got one of those too! Left out the part about the "blessing" of spending two hours in the car with her yesterday. | ||
| greenetree Supporter Username: Greenetree Post Number: 5517 Registered: 5-2001 |
Well, that tears it. I have sacrificed unselfishly all these months. I ask very little of mom. I do everything because I want to. Yet - I ask one, eensy-teensy favor....... She is going out to dinner tonight with GMF. All I asked her to do is to work in somewhere that her doctors have told her to gain 25 pounds. She doesn't think it's a good idea. Huh. Don't come to me for help next time you get cancer. |
