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  • Thanks for your suggestion Texastracy! I have an appointment with my local Neuro on Monday and going to ask him to refer me to Dr Heitzman! I will keep you updated with any new development! Thank you so much and take care :)
    I didn't have to make any changes to my sleeping arrangement because of the trach. I can sleep on my back or either side with no trach related problems.
    I have always slept on memory foam mattresses, so I could cut out sections and replace them with firmer or softer foam for best comfort and pressure relief. Recently I switched to a ROHO air mattress (under $200 on Amazon) and like it. It provides even better pressure relief.

    Anyway, don't worry about sleeping with the trach. As long as the vent hoses aren't pulling it sideways, you won't have a problem.
    Hi, Tracy, just wanted to circle back and see if you were able to change your settings? Let me know if you want to walk through.
    Hi, Tracy, the "target volume" on AVAPS can be set as low as you need it to be. Yours is probably set too high, so the machine is amping up the pressure more than you can handle (and likely need). It is a good idea, though, to run in AVAPS mode if you are experiencing air hunger, because that way your pressure can adjust according to your stage of sleep. I can tell you how to adjust it, or you can ask your RT to do it -- my gmail is lmgelb. Not knowing your height and condition, I would start the Vt at 400 or so and stop at the point where you have less air hunger and can handle the air flow. There are other settings like the length of each breath that might bear some adjustment as well. It's also possible the EPAP or range is set too high, if your IPAP is 21. Some RTs/docs don't like large intervals, though they can be very helpful in MND.
    Hi Tracy,
    Thinking of you. Hope you are doing ok. My dad just had a 24 hr flu bug but thank goodness it didn't last any longer then that. The flu has hit the assistant living facility bad where he is living in Dallas. Many of the workers were off this week making them very short staffed. Dad can still talk, eat, and breath ok but he is losing most of his mobility now in all of his limbs. They are working with him on getting the eye gaze thing in place. Take care and hugs, Kim
    Hi Tracy,
    Thinking of you! Hope you are doing ok considering this monster. You are in my prayers. Kim
    Oh, just noticed after I posted that message that we share the same birthday. Another moonchild!
    Loved your dog-family portrait! Beautiful location, too. Looked like getting a bunch of kids ready for a holiday postcard! So cute!
    Do you attend a clinic? If so, where? I got to Texas Neurology in Dallas. They made the final diagnosis. I really like seeing them.

    I don't quilt, but have many my mom made. She passed away in 2005 from cancer.
    Hi Tracy - I was in your mom's shop just once, shortly before it closed. Liked it alot - and was sorry to hear of its closing, even tho' we don't get to Lubbock very often. My husband has/had relatives there - and nearby.
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