Announcement

Collapse
No announcement yet.

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

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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; 10 Jul 2011, 12:42 AM. Reason: editing title for more response
    Liza R. McCollum

    #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.

    Comment


      #3
      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

      Comment


        #4
        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.

        Comment


          #5
          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

          Comment


            #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

            Comment


              #7
              LindaT's husband is vented, you can ask her.
              Wife of Chad (C4/5 since 1988), mom of a great teenager

              Comment


                #8
                Oh, and "trainman" is vented, he would be a great resource.
                Wife of Chad (C4/5 since 1988), mom of a great teenager

                Comment


                  #9
                  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.

                  Comment


                    #10
                    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

                    Comment


                      #11
                      Hi Liz, back late from some time away. I hope to help when come back tomorrow. m afraid I've got no wiser words of experience that Scaper.
                      My hub uses vent at night and during days for rest.
                      The trach has bena gosend in some ways and a curse in others. In our case the good ourweighs the bad.
                      Wishing you both some peace in the adjustment.

                      Comment


                        #12
                        I have a cuffed trach and I don't use a vent during the day. At first the two hardest things were needing suctioning and speaking ... as you seemed to surmise. When I first got the trach I got an infection. It seemed that I needed to be suctioned every few minutes. After the infection cleared up and I got used to it I now suction maybe twice or three times a day. Speaking can be a problem. I use a Passey-Muir speaking valve which helps greatly in speaking relatively normally. If you don't have it on you have to cover the hole with your finger to speak very well and you have to take a breath. This often results in broken up sentences as you run out of air.

                        Maintenance is pretty easy. I have a disposable inner canula but I still clean it out sometimes during the day. This is where the suctioning and a trach brush comes in handy.

                        Also, I get a fair mount of secretions around the stoma so I still have to use the gauze pads to absorb it. It's kind of annoying but it does work.

                        I change out my trachs by myself. Some people say that it hurts but I don't have very much feeling in the area so most of the time I don't even know its there.

                        If you have any particular questions, please ask.
                        Last edited by StarLord; 10 Jul 2011, 12:59 PM.

                        Comment


                          #13
                          Originally posted by mcco5543 View Post
                          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.
                          Large amounts of secretions are a lot more likely at the beginning and should thin out as her body becomes accustomed to having a foreign object in a very sensitive place. Personally, I find that trachs made from stainless steel produce less irritation, but I don't think they're commonly used in the US. The only time I feel like I'm choking (other than when I am in fact choking) is during turns and transfers, when my trach collar sometimes gets pulled crooked and the trach tube digs into the side of my trachea. Good positioning (both in bed and chair) and making sure vent tubings are straight and not too heavy are really important. Caregivers need to be as gentle as possible when handling her trach. And of course you want to do everything possible to prevent infections, which can produce absurd amounts of secretions. Constant handwashing, regular trach changes, good ostomy care, and mainly - keeping sick people away from her. An unfortunate Catch-22 of suctioning is that (while frequently unavoidable) it's another source of irritation and potential for infection, leading to, you guessed it, more suctioning.

                          It will take some trial and error to find vent settings she's more comfortable with. Some people like bigger volumes and less frequent breaths, or the opposite. Different brands of vents have different options. Most long-time vent users have a model they swear by. And a model or two they hate. The "shape" of each breath can also be adjusted. Some people like a sharp inhalation while others like a smoother, more drawn-out wave pattern. A respiratory therapist will hopefully help her figure it out.

                          I spent my first few months on a vent terrified and begging for help. No sugarcoating, it's not an easy thing to adjust to. But it does get easier. The body gets used to it and eventually, so does the mind.

                          Comment


                            #14
                            Wow this is great info! I'm confused though.

                            So the trach makes you feel like your choking and needs to be suctioned even not hooked up to a vent? (i'm so sorry i'm so stuck on stupid when it comes to this topic). I was hoping that eventually the trach (minus the vent) would just feel like a part of your body.
                            Liza R. McCollum

                            Comment


                              #15
                              Hi Liz, My husband found the Bivona brand of trach tube better than the Shiley he started out with. When he was in rehab they used the stainless type Scaper talked about, but not available here.
                              His has a cuff that we inflate for being on the vent only. Otherwise it is down for eating, speaking etc.
                              An aide and I change it ourselves monthly and except for a minor procedcure for some scar tissue has been free of complications.
                              The secretions seem to be different for everyone, Some days we only suction a few times and other times a lot. We also use a cough assist.
                              Finding the most flexible suction tube was the most helpful. the first ones we were send were harder clear tubing. Now we have red rubber very flexible ones.
                              He is a very laid back guy and does not have a lot of anxiety about the vent, but if it were me I would.
                              Reading other people's experiences here is a great help. I'm no expert.
                              Last edited by LindaT; 11 Jul 2011, 4:30 PM.

                              Comment

                              Working...
                              X