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I got angry and lit fires at the hospital last week. The hospital originally planned to just release mom once again after barely doing the minimum to stabilize her and not give any additional aftercare. Just go home and resume what you were doing. Â She had only just barely started eating solid food again and they still had her on IV fluids. Â I expressed concern saying this is exactly what happened the last time after her ICU incident, the hospital let her stay a few days and then decided she was "okay enough" to go home even though they had not addressed the issues that led to her potassium drop.... her uncontrolled ( even on meds ) pain and nausea. Â So I told them, even with me here now supervising her and trying to get her to stay on top it, she could not keep anything down, and within days was right back where she had been.
I told them I was worried that happening this close to scheduled surgery, would mean she would not be able to have the surgery... and the surgeon made it very clear because they will have 4 docs working on this, this was the only slot they all had for months. Â The hospitalist actually tried to justify it and argue medically speaking, she was technically stable and they had no reason to keep her.... I shut him down. Seriously? She is a cancer patient doing very badly and malnourished, you know she is having major surgery next week, and you are just saying "Oh, go home and if it happens again, just come back!" instead of proactively giving us any options to keep her stable until the surgery? Â I said there has to be something you can do, or someone can. He admitted his hands were tied and said he would speak to his supervisor and see what they could do. Â I spoke with the supervisor and she admitted it was a bad situation and just the nature of disease this bad....I said that isn't good enough, there has to be something we can do, if you won't keep her in the hospital.
Even if I had to drive her to more appointments, already an issue for us since they are in the middle of nowhere. She said maybe there was, if we could get IV fluids at home, and went to set that up. Â I thanked her for thinking outside the box to do so. While waiting, I had called and left a message for mom's surgeon's nurse to call back. When I told her what was going on, she agreed it was not a good situation to lead up to major surgery. Mom could hardly keep anything down, even simple liquids, and as soon as the dehydration kicks in, it gets worse which makes dehydration worse and turns into a nasty chain cycle that needed to be broken so she didn't end up hospitalized and unable to have the surgery. Â The nurse spoke with the surgeon and explained the situation, and he agreed with my reasoning that it was too risky even with home IV fluids, and felt mom would be better off if they could monitor and get her where she needed to be for surgery. So he didn't hesitate to suggest we bring her in and admit her to the main hospital so he could help personally oversee her care. Â I am soooooo thankful they actually listened and did not just trying to shrug it off like the hospital in Slidell did, twice. Â That is unacceptable.
The surgeon ordered new CT scans and other things, and of course found that her nutrition levels were real bad. Â They found there is some sort of blockage in the small intestine, that is likely what is causing her to be so sick and not be able to keep food down. Â Based on his experience, there is a chance it is from the cancer spreading, but he can't be certain till he goes in to see what the tissue is. Â The lymph nodes that were already effected are enlarged, and it looks like a 3rd is now effected. Some of the affected lymph nodes cannot be removed. Â We talked with palliative care to discuss options.
Having surgery will give her extra time, provided there are no complications, and once the stuff is out of her and they clear the blockage they would probably put in a feeding tube. There is a chance after that and if she heals well they can try chemo again, and as long as she does not have another allergic reaction to it, they will see if it helps. So there is some slim hope. The whole problem is that she was allergic to the main chemo drugs they use to treat this type of cancer, and the idiot chemo oncologist kept her thinking it was okay to wait and try another and another, instead of explaining to her how serious it already was and they should have surgeried her to begin with to remove it all, and then done more chemo, not the other way around. Â The surgeon does not want to promise this will cure it, because he can't remove it all and there might be microscopic spread elsewhere. So we have to hope chemo will help destroy the rest after surgery.
This sort of travesty of advanced medical care happens everywhere, far too frequently, within healthcare systems in well developed countries and in facilities that have more than enough financial resources and technology to do it right, but choose not to. Big corp hospitals and big pharma have not truly been about curing people for a long time. Afterall, they get more money by making you a long term "customer" so you have to keep coming back for expensive treatments. Â Greed for more money that leads to innocent people like my mother suffering.
You have to strongly advocate and fight for your healthcare rights to be sure you get the best care you can, and be educated about your conditions and situation so you can fight that fight, or know someone who can on your behalf. Â You also have to get lucky enough to find those special diamonds among the lumps of coal in these medical systems, the ones who are not in these fields just because of the money or forced into it by their families - the doctors, nurses, and staff that actually give a shit and want to help save lives and make a genuine difference and do what is right for the patient.
Mom has surgery tomorrow morning, and is booked for a 9 hour slot. It is a pretty major surgery and will have an extended recovery time. She is determined to fight this with everything she has. Â We need to give her all the laughs and happy things we can right now. Prayers and meditation for channeling healing energy. Many friends have already started prayer circles for her. Please feel free to join in. The more the merrier and stronger the energy! Â I will make another update after the surgery, when we know more. Â Mom and I send our love and thank you all for your love and support during this difficult time.