Despirate for advice, mom has been in critical condition for nearly 2 months
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Kamel
Member Posts: 5 Member
Please accept my cry out for help. I have no where else to turn. I have exhausted all of my resources... I am completely at ends with this, and I just need good wholesome advice =\. I am the son [25 years old] of my mother [49 years old] and am currently tasked with making her medical decisions.
My mom is a surviving melanoma skin cancer patient [this may or may not apply, as you will learn, hence not posting in the skin cancer forum]. She discovered it in '91 [I think], but was told by the doctor it was nothing. A couple of years later, she got a second opinion, and it turned out had it been caught the first go around everything would have been ok, but since the wait, it had advanced. Due to this, she began experimental clinical trials at Duke University Hospital. This past november, she passed her 5 year mark of no recurrences, and had a full PET scan, etc, and it all came up clean. She also had a minor surgery to remove a benign tumor at the base of her neck, right next to the spine.
Fast forward 2 months, she began having severe headaches. They persisted [seemingly getting worse] for about 3 weeks. After this, she got prescribed antibiotics, amoxacillan. The next day she began throwing up. We rushed her to the ER, which said and did very little, took a CT scan w/o contrast [she is allergic], gave her nausea medicine, and sent her on her way. 2 days later, she's not getting any better, we took her back, except this time to a highly recommended hospital closer to where we live. Same thing, minus the CT scan. Exactly 1 week from the day she began vomiting, I caught her mixing up her words as she was speaking, almost like speaking in tongues. She thought that she was making sense, but clearly was not. I rushed her to the [same] hospital where she was admitted [3/3/10]. Her symptoms at this point were nausea, vomiting, fever, and headache.
As the week progressed, she seemed to have more frequent and powerful attacks at fairly random intervals [around 2-3 per day] where she would become highly confused, and get panicked. This would normally last only 30 mins to an hour. She seemed to be getting confused as her fever was high.
After being in the hospital for nearly 1 week exactly, she had a severe episode of confusion and was taken to the ICU. She sat here for about 2 weeks, unconscious. Many things and many tests were done in the process. Ultimately, her illness was undiagnosed [they thought it was Meningitis at this point]. Since she is allergic to contrast dye, and since she was on dialysis due to poor kidney function, they did not get a good MRI. They did get 2 lumbar punctures though, which tested as abnormal levels of glucose[sugar], and protein[blood]. This is somewhat why the meningitis was suspected.
Giving her things for everything, she seemed to be making very minor steps towards recovery. Finally, she was awake and looking around, answering questions with head nods, etc. She seemed to be getting better, mostly on steroids, as far as we can tell. She was far from being 100%, but she was improving a lot.
She began digressing for about a week, at a slow rate, after her removal from the ICU. She then got a little better again, after another lumbar puncture. Later that week, she began getting better, but it was [and has been since the beginning, very up and down]. They also got an MRI of her brain. This is where it gets disappointing.
The doctors informed me that they would be discharging her to Brooks as a stroke patient. They didn't explain the MRI, and we actually happen to find it printed laying in her room. We still have a copy of that, where it has a very obviously swollen area in the brain circled, saying swollen area likely caused by tumor cells.
She was then transferred to a rehabilitation hospital, 4 hours after being informed that would happen. I was advised prior to that that the doctor would inform me of any transfers 24 hours ahead of time and would not transfer her out before knowing what is wrong with her and getting a clear treatment plan.
Once there, she did fair. She was cyclic, as from the beginning, but got worse again and began hallucinating. This was apparently due to a urinary tract infection. She was admitted back to the original hospital she was in for about 1.25 months, and now today I went there demanding answers and they said I will have to speak with her doctor. They said also that he will be there tomorrow but they never know when the doctors will be in. I also found out, through my sister, that they are planning on discharging her again tomorrow... Back to the rehabilitation hospital? I have no idea, they haven't mentioned a word to me about it.
Last time that we spoke with the doctor after the decision was made to transfer her to the rehabilitation place, he said it was their problem now and refused to speak with us. Also, the rehabilitation place has offered little advice or help for how to handle this, as they aren't really there for anything but rehabilitating.
So, now that the story is out, what should I do? Being my mother's healthcare surrogate, is there anything I can do for her? Can I demand treatment and/or answers to my questions? (for example, IF there is a brain tumor, and WHAT will be done about it if so?) Could I demand she go to another hospital or see another doctor? Would you recommend any of this? I have no idea what to do here. I am completely at the end of my rope. My mom was in great health, alive, happy, and of a very sound mind just 2-3 months ago. Now I feel like she has something that is eating away at her that isn't being fixed and more damage is happening each and every day until it is fixed or it kills her. Though she's improved some, she still has no idea what's going on and cannot carry even a basic conversation.
I'm the type of person that I would be absolutely OK if it was terminal, or if it's not, or whatever. It is what it is, and not finding out or not doing anything about it does not change what it is. I can't stand being in limbo about this, and most aggrivating above all is that no one [doctor/healthcare professionals] seems to care one ounce about my mom. No one has given me the time of day to even explain to them what has happened. I'm not even sure her doctor even knows if she was a part of clinical trials.
What are my options, and what would you suggest? Is there anything I can do to get the doctors in gear on fixing, or even pretending to care, or should I explore alternatives? Please give me any advice, I really am desperate here.
PS: I truly apologize for such a long post
My mom is a surviving melanoma skin cancer patient [this may or may not apply, as you will learn, hence not posting in the skin cancer forum]. She discovered it in '91 [I think], but was told by the doctor it was nothing. A couple of years later, she got a second opinion, and it turned out had it been caught the first go around everything would have been ok, but since the wait, it had advanced. Due to this, she began experimental clinical trials at Duke University Hospital. This past november, she passed her 5 year mark of no recurrences, and had a full PET scan, etc, and it all came up clean. She also had a minor surgery to remove a benign tumor at the base of her neck, right next to the spine.
Fast forward 2 months, she began having severe headaches. They persisted [seemingly getting worse] for about 3 weeks. After this, she got prescribed antibiotics, amoxacillan. The next day she began throwing up. We rushed her to the ER, which said and did very little, took a CT scan w/o contrast [she is allergic], gave her nausea medicine, and sent her on her way. 2 days later, she's not getting any better, we took her back, except this time to a highly recommended hospital closer to where we live. Same thing, minus the CT scan. Exactly 1 week from the day she began vomiting, I caught her mixing up her words as she was speaking, almost like speaking in tongues. She thought that she was making sense, but clearly was not. I rushed her to the [same] hospital where she was admitted [3/3/10]. Her symptoms at this point were nausea, vomiting, fever, and headache.
As the week progressed, she seemed to have more frequent and powerful attacks at fairly random intervals [around 2-3 per day] where she would become highly confused, and get panicked. This would normally last only 30 mins to an hour. She seemed to be getting confused as her fever was high.
After being in the hospital for nearly 1 week exactly, she had a severe episode of confusion and was taken to the ICU. She sat here for about 2 weeks, unconscious. Many things and many tests were done in the process. Ultimately, her illness was undiagnosed [they thought it was Meningitis at this point]. Since she is allergic to contrast dye, and since she was on dialysis due to poor kidney function, they did not get a good MRI. They did get 2 lumbar punctures though, which tested as abnormal levels of glucose[sugar], and protein[blood]. This is somewhat why the meningitis was suspected.
Giving her things for everything, she seemed to be making very minor steps towards recovery. Finally, she was awake and looking around, answering questions with head nods, etc. She seemed to be getting better, mostly on steroids, as far as we can tell. She was far from being 100%, but she was improving a lot.
She began digressing for about a week, at a slow rate, after her removal from the ICU. She then got a little better again, after another lumbar puncture. Later that week, she began getting better, but it was [and has been since the beginning, very up and down]. They also got an MRI of her brain. This is where it gets disappointing.
The doctors informed me that they would be discharging her to Brooks as a stroke patient. They didn't explain the MRI, and we actually happen to find it printed laying in her room. We still have a copy of that, where it has a very obviously swollen area in the brain circled, saying swollen area likely caused by tumor cells.
She was then transferred to a rehabilitation hospital, 4 hours after being informed that would happen. I was advised prior to that that the doctor would inform me of any transfers 24 hours ahead of time and would not transfer her out before knowing what is wrong with her and getting a clear treatment plan.
Once there, she did fair. She was cyclic, as from the beginning, but got worse again and began hallucinating. This was apparently due to a urinary tract infection. She was admitted back to the original hospital she was in for about 1.25 months, and now today I went there demanding answers and they said I will have to speak with her doctor. They said also that he will be there tomorrow but they never know when the doctors will be in. I also found out, through my sister, that they are planning on discharging her again tomorrow... Back to the rehabilitation hospital? I have no idea, they haven't mentioned a word to me about it.
Last time that we spoke with the doctor after the decision was made to transfer her to the rehabilitation place, he said it was their problem now and refused to speak with us. Also, the rehabilitation place has offered little advice or help for how to handle this, as they aren't really there for anything but rehabilitating.
So, now that the story is out, what should I do? Being my mother's healthcare surrogate, is there anything I can do for her? Can I demand treatment and/or answers to my questions? (for example, IF there is a brain tumor, and WHAT will be done about it if so?) Could I demand she go to another hospital or see another doctor? Would you recommend any of this? I have no idea what to do here. I am completely at the end of my rope. My mom was in great health, alive, happy, and of a very sound mind just 2-3 months ago. Now I feel like she has something that is eating away at her that isn't being fixed and more damage is happening each and every day until it is fixed or it kills her. Though she's improved some, she still has no idea what's going on and cannot carry even a basic conversation.
I'm the type of person that I would be absolutely OK if it was terminal, or if it's not, or whatever. It is what it is, and not finding out or not doing anything about it does not change what it is. I can't stand being in limbo about this, and most aggrivating above all is that no one [doctor/healthcare professionals] seems to care one ounce about my mom. No one has given me the time of day to even explain to them what has happened. I'm not even sure her doctor even knows if she was a part of clinical trials.
What are my options, and what would you suggest? Is there anything I can do to get the doctors in gear on fixing, or even pretending to care, or should I explore alternatives? Please give me any advice, I really am desperate here.
PS: I truly apologize for such a long post
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Comments
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winding road
What a winding road you have been traveling with your mother. And to have the strange brain symptoms coming from out of the blue like that, well it's amazing that you sound so level-headed at this point.
You are changing horses, no longer just the caring son but now also the decision-maker. You must exercise your responsibilities as health care proxy. Proceed as if you were your mother, in good health and mind.
Obviously a likely explanation is a brain met of some kind. If I were in your shoes, I would make a list of no more than 5 questions and email them to Mom's oncologists' nurse. The nurse would then call me and give me answers by phone (it only took me 3 months to figure out how that office works). If Hospice is indicated, get the ball rolling.
My mom is much older, and a cancer survivor of less than two years, but she does have several small distal mets going on. It's amazing what imaging equipment does not show at times!
My dad had melanoma, and then a very rare melanoma followed by surgery and radiation, and died two years later with very advanced organ involvement. The good part is that he enjoyed life until 2-3 months before he died.
Good luck with the days ahead, and I hope you get some comforting news soon.0 -
Thanks for your advice. IBarbara53 said:winding road
What a winding road you have been traveling with your mother. And to have the strange brain symptoms coming from out of the blue like that, well it's amazing that you sound so level-headed at this point.
You are changing horses, no longer just the caring son but now also the decision-maker. You must exercise your responsibilities as health care proxy. Proceed as if you were your mother, in good health and mind.
Obviously a likely explanation is a brain met of some kind. If I were in your shoes, I would make a list of no more than 5 questions and email them to Mom's oncologists' nurse. The nurse would then call me and give me answers by phone (it only took me 3 months to figure out how that office works). If Hospice is indicated, get the ball rolling.
My mom is much older, and a cancer survivor of less than two years, but she does have several small distal mets going on. It's amazing what imaging equipment does not show at times!
My dad had melanoma, and then a very rare melanoma followed by surgery and radiation, and died two years later with very advanced organ involvement. The good part is that he enjoyed life until 2-3 months before he died.
Good luck with the days ahead, and I hope you get some comforting news soon.
Thanks for your advice. I had not thought about the email route, actually.
I would even prefer it if I were to be able to write a letter or email to the doctors, because that would keep them from having the ability to diffuse me or interrupt me before I finish asking what I have to ask. They can sometimes act like their time is made out of pure gold =\.
As for her primary doctor, maybe I need to just write or type up a letter to have passed to him with a phone number to reach me at to give his answers, rather than relying on being able to catch him at the hospital.
Edit: Also, thanks so much for reading my massive post. I actually did not expect many people to have the patience to even read it. Thanks for that, it means a lot.0 -
Depends if you want to use aKamel said:Thanks for your advice. I
Thanks for your advice. I had not thought about the email route, actually.
I would even prefer it if I were to be able to write a letter or email to the doctors, because that would keep them from having the ability to diffuse me or interrupt me before I finish asking what I have to ask. They can sometimes act like their time is made out of pure gold =\.
As for her primary doctor, maybe I need to just write or type up a letter to have passed to him with a phone number to reach me at to give his answers, rather than relying on being able to catch him at the hospital.
Edit: Also, thanks so much for reading my massive post. I actually did not expect many people to have the patience to even read it. Thanks for that, it means a lot.
Depends if you want to use a carrot or a stick to get results...
It is absolutely within yours and your mom's rights to get a copy of her test results and treatment plan. If the hospital dr won't discuss it with you, call the complaints center/patient relations department of the hospital. Either ask nicely, or threaten legal action if you do not get some answers. Either way, I would not want my mother to continue treatment there, so I would only be interested in getting her file. Rehab may be indicated, but oncology consult at the same time would be smart.
As you said, you can deal with whatever is wrong, but you gotta know. If it's brain mets, maybe you will let her finish rehab, then come home with hospice. If it's an acute stroke situation and not tumor, that's not indicated at all as it may get better.
DEFINITELY be your mom's advocate and ask the questions she can't right now, and don't stop until you're satisfied that her best interests are being served.0 -
Sorry
I am so sorry that you are having to deal with this. I would certainly get a second opinion. Also, do either of the facilities you are dealing with have a social worker or an ombudsman? If they do, talk with that person and explain your questions and concerns. Do you have an older family friend or relative who can go with you to talk with the doctor? If so, take him/her with you. Sadly, some people, doctors included, don't have the respect for young people that they should. Make an appointment with the doctor. Call his office and demand a meeting. Do whatever it takes to get answers to your questions. Definitely, ask for copies of all reports. You have the right and responsibility to have your questions answered to your satisfaction. Don't hesitate to file a complaint if that is what's needed to get help. I can certainly understand your frustration. Put it in a letter or email, too. Try to be concise. Write down your questions. Tell the nurses and doctors that this is what you need to know. Be the squeaky wheel. Best of luck and let us know what happens. Come here when you need to vent. Fay0 -
I did not want to leave you
I did not want to leave you guys hanging. Your advice was definitely valuable, and helped. I did want to let you know that unfortunately, my mom did not make it. Her trech was removed, and later a complication from that caused her to choke in the middle of the night. She was kept alive for an additional 5 or so days until they pronounced her clinically braindead and took her off of life support.0 -
HardKamel said:I did not want to leave you
I did not want to leave you guys hanging. Your advice was definitely valuable, and helped. I did want to let you know that unfortunately, my mom did not make it. Her trech was removed, and later a complication from that caused her to choke in the middle of the night. She was kept alive for an additional 5 or so days until they pronounced her clinically braindead and took her off of life support.
How very hard this must be for you. I am so sorry. Please take care of yourself. Fay0
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