mom came home

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dian_na

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My mom came home from the hospital last Wendesday. I fought with them because I could tell she wasn't well. They kept her one more night. They also stopped antibiotics last friday. Her white count at the time seemed to hover at 14. They think her infection is do to yeast on her butt. My mom does have yeast on her butt or what appears could be, I don't know if they cultured it at all. Its like a haze, however her skin is really dry. Mom's never had a bed sore, I keep up on that, She's been bedridden for 3 years, The last few weeks I couldn't get the red to go away so I thought perhaps they are right.
She still seems sick, I asked her primary to have another cbc done and just as I thought her white count is 17 now.
She needs IV anti biotics, I'm afraid they may have took it upon themselves not to treat her. For now I am trying to figuire what my next plan of action should be.
Fighting the medical profession sometimes is like fighting City Hall. I am compassionate to those who do not choose a vent, I reach out and feel no matter which way one chooses its hard on the family regardless. Mom signed for her own ventilator, and I feel its my responsibility to gaurd her wishes. Its them that makes me think of stopping medical intervention and I hate them for it. My passion has always been medicene, being forced into this position makes me nearly hate everyone of them.
I just don't know what to do.....
 

trfogey

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I'm sorry that you're in this position, dian_na. Is there any way that your mother's primary care physician can help you pressure the hospital to readmit her, given that there is evidence that discontinuing the antibiotics has led to to some resurgence of the infection?
 

Ms. Pie

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Yes Dian, can one of her personal doctors intervene? I'm so sorry this is so difficult. Unnecessarily so too in my opinion. Prayers.
 

notme

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Probably a silly question, but I'm assuming they've done blood cultures from several sites to be sure she isn't getting septic? And, are there OTHER hospitals in the vicinity?

Your mother chose to vent and to fight--it's their obligation to treat her and make her as well as they can! it's a shame they spend so much time trying to convince you to give up.

Some infections become resistant to certain antibiotics and others needs to be used. Of course a culture needs to be one. Can you get her records and go over them with her primary doctor?

best wishes
 

dian_na

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She's nearly locked in I think now, she's not blinking to questions asked, I don't know how much is infection nor how much may be the desease. All the books say the eyes are not affected, well if thats true something is wrong here. She doesn't look as uncomfortable tonight as she has been,
 

brooksea

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All I can say is good luck and hope she will be OK. I don't have any advice.
 

dian_na

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Now her blood sugar is back up. Its 327 that means I have been right, she still has an infection and she needs iv antibiotics. God why do I have to fight these people every step of the way. I would love to be passive and kind but these people when you are they don't do their jobs. Grrrrrrrrrrrrrrrr
 

lms9258

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I am so sorry you are in this spot. I have felt the same way many times. Some of us are in the position of having to try to figure every single darn thing out, and then relay and convince the medical providers. You should not have to constantly be educating them, and insisting on the proper care for your mom...but it is what it is. You said in one of your previous posts, that you are generally quiet in person, unless it comes to your mom. Do you have at least one Dr., nurse, someone from ALSA, or any other support person that could help, so you don't feel like a one woman army? Situations like this make me wish I could get a few forum members to come help. I know they would if they could. I'd like to write a long letter to the people that essentially aren't going the distance because of your mom's condition. Sorry if this seems like a rant, but I am angry for YOU! You already have so much on your plate caring for your mom. I don't have any great advice, just feel so bad that you always have to go into "fight" mode to honor your mom's wishes. I'm rooting for you.

Laura
 

Atsugi

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Dianna, I just want you to know I'm watching and listening. More later. --Mike
 

notme

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HI

Have you tried eye drops to be sure her eyes are not just painfully dry? that can make it hurt to even move them at all. I wish I could help :(
 

dian_na

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I keep eye drops for her eyes, she's bad at forming sleepers like. Her blood sugar is now 411. I have given her 3 units of Humlin. I know its infection. They had her on iv antibiotics first 3 days in hospital then stopped them. She showed improvment for perhaps 2 more days after then going backwards.
Now home since Wednesday she has progressivly gotten worse. I am going to call her doctor who is polish.
Once while speaking to him I heard a voice in the back ground and in his exterme hard to comprehend high pitch polish voice he says, "dest mas Gee Pee Ss". and back at him I said, "Dr Jamry, that thing is never going to understand you, type it in",
He says, "nonono I'se teel laaadihe ehere ta go den shehan takn me dere."
I told him to buy himself a city map he would get places much faster and blamed it on a dumb gps not the fact it doesn't understand him. He kinda reminds me of the characters Tim Conway use to play on Carol Burnet show except you may never know what Dr Jamry says, and if he stuck in translation he does this in your ear, "aaahhhhhhh ...." and your left thinking , 'is he really going to throw up in my ear!'.

Allen, thank you for the comment and I am asking the doctor to do just that, they stopped way to soon. My thoughts are she will end up back in hospital at least for pic line.

notme, they did the cultures but discharged her before the results.

CJ ty, theres not a lot really to say I'm just venting out loud so to speak I think.

Laura thank you, I wish I had an army, I always think the medical folks will do the right thing and seems since mom's ALS diagnosis, they don't. Its changed so much in the last several years people just don't care anymore. Healthcare needs reformed alright, they need to get rid of their dead weight.

Mike, I know your hands are way over full, my heart is with you and Kris, what your experiencing isn't an easy task and your attention is most needed there. I understand.
 
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dian_na

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Mom blinked that she did not want to go, I was able to get her blood sugar under 300, but its still spiking at over 400 today.
AT least she is blinking to yes and no questions thats an improvment to the last several days.. I'm just so frustrated at these doctors. But I have explained to mom we're gonna have to go back to get this under control we don't have a choice. I still think its infection.........
 

joni51

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Go with your gut feeling Dian...
 

dian_na

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I got my mom's blood sugar down to 175-275 which is a far cry from where it was. Her doctor calls, I get so frustrated talking to him, Hell I am treating her he isn't. Her white count is at 17. He ups her Vanco to 250mg, 4x day. I told him its been a week we need to reculture everything. He agrees, I don't want her to get Vanc resistant so its a balancing act as to what to do and this homecare crap is about to drive me insane, thus all the resent post on all the forums, trying to keep my mind busy, sorry folks tolarate me I calm down quickly. Its good advice I promise jus an overload.
If this antibiotic ever works which I doubt her blood sugar I have a feeling is going to fall like a rock, nothing pretty about a watching your mom seize while you frantically give her shots to up her blood sugar however I am curious if ALS will hide a seizure, something we haven't experienced.
I feel like I am on a run all the time as though I am trying to catch up with myself, but oh wait thats after I take the four steps back before rushing onward again. I wish I trusted the hospital to treat her if I was to take her there. They would just let her die
 

pbush

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Dianna

Stop. You cannot be everywhere, do everything, make every decision, save what cannot be saved. You are pushing yourself into a dark hole from which you may never recover. You need to take care of yourself. Please look around and see the boundaries of the life you have created--they are shrinking rapidly.

You may rail against my words, but in your heart you know they are true. You are existing on the adrenalin of the ever next crisis to appear. It's time to coast.

My best wishes to you.

V, Caregiver
 
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