Need trach and vented advice

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Tom J

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I was trach and vented during a nasty dealing with pnemonia last Wednesday. I-am currently in a process to get weaned from vent and arrange home health care with VA. I have a Trilogy and my home is fully disability prepared. Roll in shower, etc. I am seeking advice and guidance on being at home with trach both vented and not. Was diagnosed bulbar onset December 2019. Thank you and your reply’s are greatly appreciated.

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ARCG

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My husband was not reached but used the trilogy and was home the entire time 6+ years. He had a good quality of life. We also had our home fully disability prepared. We were able to hire a local home health care aid one day a week and we also had an aid come in two mornings a week. They were ALS knowledgeable. I cared for him most of the time. I felt keeping in at our accessible and equipped home was best as I wasn’t confident the nursing homes had the expertise to care for an ALS patient. In addition to all the equipment an ALS patient needs, including a generator, I had cameras, call bells, communication devices, etc. so he always able to contact me or a caregiver if he needed assistance,
 

ARCG

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I meant to say, not trached.
 

lgelb

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One of our members, DianeH, has some good stuff at her site (she is trached and vented) at ALS From Both Sides.
 
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Tom J

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ARCG. Thank you for the reply. Our home is brand new and built to be disabled compliant. We did this with the help of the Veterans Administration Special Adaptive Housing grant, which I was qualified for as 100% disabled. And our life savings. I will hopefully be released home with the trach but not dependent on ventilation. I had a very nasty bout of left lower lobe pneumonia which led to my situation today. I was ambulatory entering the hospital and i am starting to get that back at hospital. FYI my hospitalization, trach, etc. we’re all at Vanderbilt University Medical Center. After trach and vent I have been transported to Select Specialized Hospital Nashville to be weaned and made ready for home.

I am seeking information for what if’s. As in what if weaning goes bad and I need vent at home. I know many pALS have done this and I am seeking how they did it. Thank you alland let’s continue fighting this monster until we kick its ass.
 

jonico

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Hi Tom,

I have experience with a vented PALS. I'll keep an eye out for your posts to see if I might offer any helpful insight.

My wife came home from rehab after her trach and, like you, wasn't vent dependent at that time. I'm not sure how this goes for everyone, but I imagine it is possible you will never be vent dependent. Initially, she just had a mask/collar type thing with a strap that was placed over the trach opening to provide oxygen and some moisture. Her doctor recommended using the vent overnight, which we did. Gradually, and I don't remember the pace on this, she became more and more vent dependent until she could only be off it for pretty short periods of time while being transferred. She was very comfortable breathing with the vent. It just became the way she breathed, and I doubt she ever thought much about it.

All the best...Jon
 
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