Need Guidance
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- This topic has 45 replies, 12 voices, and was last updated 12 years, 3 months ago by darla.
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July 12, 2012 at 11:01 am #62747lisaannSpectator
They are suctioning his stomach and massive amounts of bile coming out. Is this a sign for a near end? What happens when they take the suction out? I have so many questions I don’t know where to start.
July 12, 2012 at 5:58 am #62746lainySpectatorLisa, I always say this site has the most courageous, loving and caring people from all over the World. FYI: check out my discussion tonight with Briola and it will also help you in what you decide to do.
July 12, 2012 at 5:52 am #62745lisacraineSpectatorLisa Ann,
Praying for our Dad. This disease is so tricky but we are so blessed to have this sight for all the great information from loving people.
LisaJuly 12, 2012 at 3:46 am #62744marionsModeratorLisaAnn…..my heart is with you; I am also very sorry to hear of your Dad’s prognosis. Remember though, that no one has an expiration date stamped on their feet and that a accurate date cannot be given.
I remember you mentioning that he had problems with the stent so I assume that he doesn’t have one. Am I correct?Given that your Mom is not well wither, I agree with Lainy in that hospice would be of great help. It may be ordered by the physician upon your Dad’s release from the hospital or your Mom may want to call his primary care physician and he/she will order it.
Your Dad needs to be made comfortable and hospice will do just that.
Please lean on us. We are here for you.
Hugs,
MarionJuly 12, 2012 at 3:22 am #62743lainySpectatorDear Lisa, I am so, so sorry! Ask your ONC about Hospice as he can order them to come up to a year out. Do not be afraid! They will see to it that Dad stays comfortable and he can still be home. Teddy started on Hospice 4 months before he Passed and they were teriffic. The first step is hard but it is not giving up it is all about quality of life. I had them bring a Hospital bed and set it up in the living room in front of his BIG TV and it was bright and airy and visitors were comfortable as well. Comfort is the bottom line in more ways than one. If he is comfortable he will not be using up his energy to fight pain. I know this will sound weird but Hospice at home gave us the time to concentrate on what mattered most and like Teddy used to say, “we are on our honeymoon!” Be strong and do not be afraid.
July 12, 2012 at 3:00 am #62742lisaannSpectatorDear friends,
Today they found metastasis in dads abdomen from presumed bile duct cancer. Diagnosed as unresectable. Prognosis 3 -6 months . Just trying to hold it together. Is this a hospice diagnosis. What are the next steps? What do I need to do to help him not suffer?July 10, 2012 at 1:06 am #62741lainySpectatorDear LisaAnn I am not happy that surgery may be canceled but am very happy he is being transferred to the other Hospital! Hang in, be strong!
July 10, 2012 at 12:47 am #62740lisaannSpectatordmj4ctj wrote:My heart goes out to you. I know you’re very concerned and frustrated over being unable to be with your parents at this time. Have you considered getting FMLA protected leave from your job? It covers taking care of one’s parents with severe illnesses. You cannot be fired, but you might not get paid either depending on whether you have PTO you can use.
DianneThat’s the rub. I just started the job I am in now and moved and can’t take the FMLA or leave time yet.
July 10, 2012 at 12:46 am #62739lisaannSpectatorUpdate, Talked to Dad’s main surgeon and they are going to transfer him to UC tomorrow. They also said that if he is not stable enough the surgery will be cancelled again…..pray this does not happen……
July 9, 2012 at 1:33 am #62738marionsModeratorLisaAnn….caregiving from far away is always difficult. I agree with Dianne in that you must be very frustrated -rightfully so. Hopefully things will improve for your Dad real soon – Wednesday is just around the corner.
Hugs,
MarionJuly 9, 2012 at 12:44 am #62737dmj4ctjMemberMy heart goes out to you. I know you’re very concerned and frustrated over being unable to be with your parents at this time. Have you considered getting FMLA protected leave from your job? It covers taking care of one’s parents with severe illnesses. You cannot be fired, but you might not get paid either depending on whether you have PTO you can use.
DianneJuly 8, 2012 at 11:02 pm #62736lisaannSpectatordmj4ctj wrote:LisaAnn,
Have they placed an NG tube in your father? This can go a long way in alleviating nausea, esp. if things aren’t moving through the GI tract very well. I’d have to say that the presence of bile is a good thing cause it’s obviously getting through his bile ducts into his duodenum. Perhaps he has a bowel obstruction? Is his abdomen distended? He may need surgery for that. I work in an OR and we see surgery for this quite often and it is frequently due to reasons other than cancer. I sure hope they get him feeling better soon. He needs to be in the best shape possible for a liver resection this week.
DianneAs far as I know he is not distended. He has had some diarrea today though, so maybe that rules out a blockage. I just pray this surgery does not get rescheduled again.
July 8, 2012 at 10:59 pm #62735lisaannSpectatorLainy wrote:Dear LisaAnn, I am NOT a Medical person, I was a Caretaker, but I have to say, I do not understand in your Dad’s preesent Medical Condition, how they can do surgery. Are the 2 Hospitals communicating and all Doctors concerned? I simply, logically don’t see how they can do surgery in his present state. Someone needs to talk to his Doctors ASAP. I am sorry to say that a Regional Hospital is not the best place to treat CC, they just don’t get the cases. I don’t know what else to say. Guess if it was me I would find out how far the U of C is, get him transferred if possible, clear up what may be going on and then have the surgery. My husband had a double E Coli infection before his surgery and they would not touch him until the infection was clear. Best of everything and I sure hope it all works out. P.S. Is anyone with your Mother for support and strength?He does not have a tube and as far as I know, the doctors have been in contact with UC doctors. This hospital is close to home and my mother cannot drive in the city. So the decision was made to keep him at the regional center and keep him hydrated and on pain meds until they can get him in for surgery. He may be getting antibiotics too, not sure. No one is with my mother and I can’t be there as I work and live too far away. Other family members and friends are basically absent. A couple of church people have been there, but other than that, nothing. It is one of the things that stresses me out the most, but I can’t afford to quit my job. My mother is not well herself. It is an impossible situation.
July 8, 2012 at 7:08 pm #62734lainySpectatorYEP, Marion. Teddy had at least 6 tube infections over the years with his stents and each one was due to sludge and infected stents. Unfortunately each time a blood culture had to be done with results taking days so they would start him on an Antibiotic IV as he was in ER anyway then they would admit him and each stay was 4 -5 days. The drug of choice for him was Leviquin and usually worked pretty quickly. After the first one I knew that when his temp would go over 100 and he got the chills it was time to go to ER.
July 8, 2012 at 6:29 pm #62733marionsModeratordm….I have learned that blockages or clogging (occlusion)in plastic biliary stents are caused by accumulation of microbial biofilm growth and biliary sludge accumulation.
Hugs,
Marion -
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