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Thread: BFF getting trach/vent.help need to learn all i can-another question added 7.10.11

  1. #1
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    BFF getting trach/vent.help need to learn all i can-another question added 7.10.11

    I have no idea where this goes (mods please move it wherever it truly belongs) I will also be posting this in another forum that it may be appropriate in. normally I don't post twice but i'm really hoping to get some responses. Thanks.

    My Best friend is getting a traech/vent due originally her sleep apnea issues at night and now from her restrictive lung disease during the day. She hasn't made it 2 weeks without landing back in the hospital so it's time. I'm scared to death I know nothing about vents/traches, don't know anyone who has them, never even spoken to someone who has /had one. I'm not even sure what my questions are. But i know they're all swimming up there in my head all jumbled up. Does anyone here have a trach/vent know is very very close to someone with a traech/vent that can shed any light on this topic for me. Any little thing you are willing to share I would really like to know. My BFF is more like the big sister I never had then a friend and she feels the same. We both have Spina Bifida but a trach/vent is a treach/vent right? wrong? I am including this post in the caregiver forum becuase I fully intend if at all possible how to care for her traech vent so that we can still spend as much time together as possible without fear or worry on either end. I'm so confused..please help. I'm very sorry if I'm in the wrong place as well.
    Last edited by mcco5543; 07-10-2011 at 12:42 AM. Reason: editing title for more response
    Liza R. McCollum

  2. #2
    Hi Liza. You're a good friend to be asking these questions. It's probably a lot scarier as a prospect than in reality.

    First off, if you want to feel safe, you'll be making a new best friend soon. Mr. Ambubag. You'll need to be familiar with the type of trach your friend uses as there are different models that open, close, and lock differently. You'll also need to learn how her vent works and how the tubings fit together and connect to her trach. If anything whatsoever goes wrong, as long as you have that Ambubag you can handle it. I don't know where you live, but in my area they offer a free 2-day vent course for caregivers. Your friend will no doubt have a respiratory therapist - maybe you could request a few tutorials.

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    oooh classes that's a genius thing~ and yes i will absolutely talk to her nurse if that's what my best friend wants. The trach/vent hasn't even happened yet but it's going to shortly. Plealse tell me lots more. Tell me about mr. Ambubag? I like the idea of being ok as long as I have him by my side! makes me feel brave.
    Liza R. McCollum

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    Moderator jody's Avatar
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    there are a lot of folks here on a vent, im surprised there are not more replies.

    I would think you can get training with a visiting nurse, or at a hospital.
    when my son used certain machines or procedures, a respiratory therapist instructed me on how to use them. once visiting nurses came to train and also to review after a week or two to see how it was going.

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    it's late on the East Coast USA, maybe more replies tomorrow. I hope so.I had my post in another thread but a Mod moved it here. I am really looking for any and all info on trachs/vents including info on the psychological/social implications..seriously feel free to act like i'm 2 and teach.
    Liza R. McCollum

  6. #6
    you could call united spinal, they are in queens ny. They may have some names ans places that you might never find out about, until it is 2 years later.
    you are in the right place, if your on cc
    take care, ok
    cauda equina

  7. #7
    Senior Member zillazangel's Avatar
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    LindaT's husband is vented, you can ask her.

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    Senior Member zillazangel's Avatar
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    Oh, and "trainman" is vented, he would be a great resource.

  9. #9
    Quote Originally Posted by mcco5543 View Post
    I am really looking for any and all info on trachs/vents including info on the psychological/social implications..seriously feel free to act like i'm 2 and teach.
    It's no doubt different for everyone, but I'm pretty self-conscious about my trach and wear scarves or turtlenecks to cover it while I'm up. I use a phrenic pacer during the day though, so I don't need to even carry a vent on my chair and most people probably can't tell I'm not breathing on my own. I think it's possible to keep vent tubing under one's clothes, but most other people I know who use a vent full-time lay the tubes on top of their clothing. Those with trachs but who can breathe on their own mostly keep their throats uncovered too. That's the safest way (for immediate access and visibility), but I was injured as a teenage girl and never quite got over the ick factor.

    Speech will be the main social implication. I don't know how your friend speaks now with her difficulties, but she'll almost need to "re-learn" how to speak on a vent. There are special valves that can make it easier, but she'll probably need to speak according to the timing of each breath, which means noticeable gaps in her speech patterns. It can be embarrassing. Especially when strangers ask you a question and assume you're mentally impaired if you don't answer immediately. Even people I know will fall into the annoying habit of trying to finish my sentences or act as my official spokesman/ interpreter. I would honestly rather repeat myself ten times than have someone try to speak on my behalf. Sometimes it's unavoidable though, like in loud public places or when my voice is particularly weak. My particular bugaboo is having to give presentations (for school) with staccato speech. It feels like time stops between breaths. Phoning can also be awkward.

    The one positive thing I can say about being on a vent (aside from the obvious plus of facilitating breathing) is that the machines available are a lot smaller, quieter, and portable these days.

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    Ok guys I got further information. Just one piece. My friend would NOT be on a vent during the day, she would have a trach but then she would be vented at night. I just saw her in the hospital today. It's still all being discussed. Her main question and fear is this.

    When she's had ventilators in the past after surgery she just remembers the horrible choking,suffocating feeling and needing/wanting to be suctioned every two minutes. The only relief she experienced was when she was sedated. I'm guessing that the pressures they used for the vent after surgery is maybe more forceful when what they use on someone who uses a vent regularly? Yes? No? I have seen many a person with a vent out and about and they didn't seem to be uncomfortable or choking. They seemed actually perfectly "fine". (excuse any faux pa I make in asking my questsions. My intent is never to be rude or ignorant, only to learn becuase I am ignorant in the "lack of knowledge sense, but don't want to be ignorant in the "rude" sense of the word"...

    Thanks for your help. If anyone can answer my question and I could take the answers back to her that would really help.
    Liza R. McCollum

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