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Thread: Help for my Dad - C5 complete

  1. #41
    Well first you have to know where Wade Park VA is in. Not the best place in Cleveland. Alot of people will not drive there to work. Let alone quialifiyed people. Get him to Metro.
    oh well

  2. #42
    tmrperry

    From what you wrote in your first post, your Dad has largely weaned from the ventilator, yet still has a trach and cannot talk--is he still not able to talk?

    If he is stable enough to be off the vent most or all of the time, then I would think he should be able to start to tolerate having his cuff deflated. The cuff is a little balloon on his trach that seals off the airway when inflated, but I don't see a reason for it being inflated if he's breathing on his own (i.e. it could/should probably be deflated all the time). I'm still on a vent, but I have a cuffless trach, which is like having the cuff deflated permanently.

    Edited to avoid confusion that KLD addressed in the next post.

    Bill Miller
    Last edited by BillMiller823; 02-09-2009 at 05:40 PM.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  3. #43
    Bill, if he still has a trach I would not assume he is using a red cap yet. It can take some time for someone to be able to tolerate this, and even use of a Passey-Muir for any length of time can take a while as it creates more resistence to breathing. If your diaphragm is your only breathing muscle, it can be weak (esp. after being on the vent) and it takes a lot of energy just to breath with the trach open (on humidified air or oxygen via trach collar...no HME needed). We can spend 2-4 weeks to get a person off the trach ready to have their trach removed, and sometimes longer if secretion management is also a major problem.

    Regardless, a good SCI rehab program will be used to doing this with newly injured folks, and should be able to move him onto some form of verbal communication fairly quickly as long as the trach cuff does not have to be up all the time for aspiration precautions (which is the case about 1/3 of the time).

    (KLD)

  4. #44
    Ok, I realized I made a mistake above (I'll edit it if I can).

    KLD is of course correct. (I realized my mistake after I got off my computer at 6:30 a.m. and couldn't correct it until now.)

    If he can't talk, then his trach cuff is inflated (unless he had damaged vocal chords or something).

    That also means he must be breathing through the trach, not his mouth and/or nose because the airway is sealed.

    So, when he can start to tolerate it, all he should need in order to talk is to have the cuff deflated and have a speaking valve placed over the inner canula.

    Sorry for the confusion.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  5. #45
    Junior Member
    Join Date
    Jan 2009
    Location
    SC, but my Dad lives in OH
    Posts
    23
    Just wanted to post an update. My dad will be transferred Wednesday morning to the SCI Center at the Cleveland VA! Thank you so much for everyone's help and advice. I definitely couldn't have done it without this wonderful group! I'll will keep posting updates as I get them. Thanks again!!!

  6. #46
    Junior Member
    Join Date
    Jan 2009
    Location
    SC, but my Dad lives in OH
    Posts
    23
    So my dad's been in his new place for a few days now and it's been wonderful. They really seem to know what they're doing! My dad is already talking (I spoke to him over the phone for the first time yesterday) and he's even eating regular food. The only thing he can't stand is the new way they suction him. I can't remember what my sister said it was called, but she said the tube is much bigger (in diameter) and he truly hates it. He says it's painful and he's even had nightmares about it. Poor guy. Does anyone know what this is called? I want to say that it starts with a C. Thanks!

  7. #47
    Perhaps they are not suctioning him, but instead using a machine called a Cough-Assist (Cough-allator, inexsufflator). It takes some getting used to but is actually safer than suctioning as it pulls air and secretions out by vacuum instead of sticking a catheter down inside the trachea, which can not only cause infections but can damage the cilia and increase secretion production. We use these a lot in most large SCI centers for people with trachs.

    (KLD)

  8. #48
    Indeed it is a CoughAssist machine and I happen to love mine. In my opinion, it's a large reason why I haven't been hospitalized with any respiratory infections ever since I left rehab about 11.5 years ago. But a friend of mine prefers suctioning to the CoughAssist. No worries; to each their own.

    I'm just glad your Dad is talking and doing much better--great to hear!
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  9. #49
    Junior Member
    Join Date
    Jan 2009
    Location
    SC, but my Dad lives in OH
    Posts
    23
    I just found out today that my dad has a stage 4 ulcer. I'm so devastated - not just that he has the ulcer, but because all this time I thought it was a stage 2 ulcer and my aunt was apparently in denial about it and didn't tell me. I'm so frustrated I'm shaking!!! They did a bone scan on Monday and I have a call in to his doctor to talk about it. Will this heal? What questions should I ask? What can I do from so far away? (I'm in SC but my dad is in OH, closer to more family)

  10. #50
    It's amazing how on top of everything you are. This road is rough to say the least, but you have tons of help here and kinds words too. My dad is sci too so I can understand your frustrations and fears about all this.
    My dad just had a bone scan done a few weeks ago. Where is his ulcer? Generally they use bone scans to rule out something (like infection) more than to diagnose, if I'm correct. (anyone please correct if I'm mistaken)
    From what I read here though, you are doing outstanding with this, but make sure you are taking time for yourself, we can burn out so easily when dealing with all this. Hang in there none the less and keep us posted!


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