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Please read...the good days are gone

11 years 7 months ago #22104 by Patricia could they send her home? I'm confused. Did they get her electrolytes in balance? Did any specialist see her at all? Has she had a bowel movement?
Hospice may come in but if she refuses them they have no choice unless someone else has power of attorney.
There just seem to be a lot of unanswered questions. Pat

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11 years 7 months ago #22103 by julieanne
Mama is home. SHe is not herself ( I know big surprise), but she is worse than in the hospital. First of all, she has a UTI and they sent her home with antibiotics. She is now convinced that her back pain is because of the UTI....not. She at first refused to take her morphine at home. Got irate about it....but before long, she gave in. She is very confused and talks about how she is having trouble getting things straight and even getting her mouth to work right. I suppose it is the morphine, but it didn't seem to do that in the hospital. She seems very sad today. She is very concerned about leaving Daddy alone when something happens to her. She also informed me that the hospice nurse was coming to meet with her tomorrow but she is not planning to use them. Someone will be there with her also. It was a good day that she came home but a sad day that I believe she is in for a long road ahead, as are the rest of us.

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11 years 7 months ago #22091 by Patricia
Julieanne......can you not get a real doctor in there?..Even the head resident? I know when i had my bowel blockage there was severe pain and lots of vomiting and obviously nothing was coming out the other end. Even though her lymph nodes are swollen have they even considered an ileus? Its been known to happen up to 6 months after surgery. And the worse thing you can do for that is give something to stimulate the bowels. Please bring this up. And the swelling of the hand...give me a break..carpal tunnel?...electrolyte imbalance can definately cause swelling of the tissues of the hand as well as other places. Can you get a specialist in there...a nephrologist.....anybody with a real degree? Pat

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11 years 7 months ago #22090 by julieanne
Thank you. I hope I did not appear as a "doctor basher." I have a great respect for doctors. In this case however, I just think that in his defense, it would be easier for one doctor to make all the decisions because I'm sure it is difficult for one to keep up with the other. You are right about hospice. SHe will recieve hospice care at home.
I did forget to mention that she is indeed having stomach pain that is keeping her from sleeping well. I guess we tend to always blame the cancer for everything, but I just think that after all the attempts at getting her to go, it might be something to check out.
They are pumping sodium into her IV (I'm sure this is not the correct terminology:huh: ) and it still is not going up. It goes up some and then right back down. Another thing I forgot to mention is the gobs of mucous in her urine. So much that it almost clogs the line. I guess I'm just frustrated because Friday she was her usual self and now she is having more than one issue.

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11 years 7 months ago - 11 years 7 months ago #22089 by wsilberstein
Although people talk about life expectancy, hospice will not hold you to any rule on that matter. Hospice is appropriate when treatment switches from efforts at cure or remission to palliative care. Pain management is a large part of palliative care. Hospice care can be done at home, in a hospital, in a rehab/nursing facility, or an inpatient hospice. Hospice should be able to help you plan the appropriate level of care for your Mom, and will help you transition to higher levels of care as needed. If you need a full time caregiver, at least in NY, while hospice will help, it is not part of hospice service and is not covered by insurance.
Narcotics like morphine are severely constipating. Although it might be reasonable to consider a blockage given the size of your mother's lymph nodes, a blockage would generally cause severe pain (which could be masked by pain meds) and vomiting. Obviously, Mom needs her doctors to be on top of things and carefully evaluate her status.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 7 months ago #22088 by julieanne
Thank you so much for taking the time to reply. I know you have a full plate. Here is a little update and any advice/input would be great.
Mama is still in the hospital and this is why:
1. Sodium, magnesium and potassium levels are still too low. Nothing seems to be helping.
2. No bowel movement since Friday. Actually, she finally told us this has been a problem for a couple of weeks. THe doctor (family physician....quack in my opinion) has given her stool softener, laxative, suppository, some kind of drink that "makes anybody go within 30 minutes". She has had all this within 24 hours and still nothing.
3. Her hand is hurting and swollen. THe quack doctor never looked at it and told us it was carpel tunnel....what?????????
Check for a blockage or anything that may be causing no bowel movement. Actually LOOK AT her hand and see what that might be.
My questions for you are......if the tumor (lymph node) is pressing on her back and causing pain, could it not also be related to the lack of bowel movement?

Also, we met with a hospice agency yesterday and that went pretty well. However I believe Mama may be in a little bit of denial as to what is going on. She seems to think she will return home to do all she has done before. Now keep in mind that those things included driving, canning (LOTS), lifting, picking in the garden, going to Nashville to stand at the Farmer's Market all day etc. Not just regular day to day stuff.
Again, I truly appreciate those of you who have posted.

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