Recent content by GilWest

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    Supplies to give away...

    I also have a Kangaroo Joey Pump and BOXES of feeding tube bags...
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    Dental Care

    Mom's dentist came to the house and repaired her implant that broke off when she was incubated at the hospital. If you have a good relationship with your dentist, it couldn't hurt to ask...
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    Supplies to give away...

    I have numerous supplies to give away... -Foam Trach Ties -Shiley 6 inner cannulas -14 gauge suction catheters -Suction tubing. -Sterile gauze trays -Trach care kids...so many trach care kits -A humidifier for Trilogy vent w/several reservoirs
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    Pressure sore scare

    Two hour turns is all that I found that worked. However, they can still form. As mom contracted, her head turned to where her left ear rubbed her pillow no matter how we turned her. Do the best you can and try not to be hard on yourself. Turning every to hours 24-hours a day can be...
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    My Advice: Stay Strong

    After managing my mom's ALS for 3 years, my advice is to stay strong and do not dwell. There are so many decisions that you absolutely ARE NOT going to get every one of them right. Yes, you might do something to hurt your PALS. I dozed off one evening and awoke early the next morning to...
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    The level of cruelty is off the charts

    I empathize with you, but I cannot agree. I would take anything other than ALS. Sorry you are going though this. ALS is a true sh-t show...
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    Paralyzed in making caretaker decision

    Home health and hospice services usually have a list of private duty help. Just get a list and go from top to bottom. Be prepared for folks to quit on you. We were lucky the second person we hired stayed 2.5 years and was there when mom died. Perhaps look into retired nurses wanting some...
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    Myths about hospice care

    A vent does not disqualify, but hospice companies can refuse. That was our case. The cost of the vent ate up the hospice reimbursement.
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    Alsa WV chapter

    My advice: Don't get a rare disease in southern WV...
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    Mom passed last night...

    She was in multi-system failure, so we discontinued the vent. She died peacefully in her home like she wanted. I will use this post to get on my soapbox one last time concerning vents and trachs. Consider the option carefully and consult a pulmonologist that is connected to an ALS center in...
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    What will you do after?

    I plan on giving myself 100 percent to my wife and kids. I have lived away from them for over two years now.
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    I Can't Reconcile Myself to This...

    People who are not dealing with this disease on a daily have no f'n clue and do not get to have an opinion...lol.
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    I Can't Reconcile Myself to This...

    I said the same thing today, at least you can throw something at cancer...
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    Questions about NIV vs. Trach (and vent?)

    Trach for secretions is a slippery slope...
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    My wife is now on a ventilator

    What machine will you be using at home?
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