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Thread: Pulmonologist and Vent Weaning

  1. #1
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    Pulmonologist and Vent Weaning

    I'd appreciate anyone's sharing of his/her experience.

    It's been over 9 months since my Dad's injury, C3-C4 compression, on a vent. It's a long story -- but, he's never been tested by a pulmonary specialist.

    Recently, when my Dad was in the hospital, an RT adjusted my Dad's vent settings and stated that my Dad could "trigger his own breaths" for 15 minutes -- I couldn't understand exactly what he did. He said that "it looked good" and that they'd try some more things the next day.

    The next day, the nurse apologized for giving "false hope" -- he said that tho my Dad could trigger his own breaths for 15-20 minutes, he couldn't sustain so he won't be able to get off the vent.

    By coincidence, prior to my Dad's hospitalization and after a major struggle, I was able to arrange an appointment with a pulmonary specialist who actually is affiliated with this hospital -- my Dad is with an HMO so we have to get a referral. The hospital RTs tell me that this pulmonary specialist is excellent and very nice -- but, since it's exceedingly difficult to transport my Dad, I've tried to ask if he has experience with SCI folks.

    Unfortunately, he won't answer. A nurse who spoke with him told me that he can only answer my questions during a "paid" appointment - not at the hospital (though he is an attending and on consult - according to the nurse, the ps said that it's against hospital policy).

    1) Is it important to have a pulmonary specialist who has experience in SCI?

    2) Does anyone know if the ability to "trigger his own breaths" means anything?

  2. #2
    Asking questions about a physician's qualifications is not something that should be restricted to the appointment. It has nothing to do with the consultation. Something else is going on here.

    While it is nice to have some SCI experience, I would not allow that to make or break the opportunity for your dad to see a pulmonologist. Be sure to take the professional version of the clinical practice guideline I gave you previously, and ask that if he is not familiar with it that he review it and use it to guide your dad's pulmonary management. If he will not even look at it, he is not the physician for your dad.

    I suspect the RT changed the sensitivity setting on you dad's ventilator to allow a weaker breathing effort to trigger the vent. The nurse is dead wrong that this is a waste of time.

    It takes some time (often months) of using this function multiple times daily to build up endurance and strength in the muscles he still has working. Doing this multiple times daily for 15 minutes will go a long way toward that goal. Once he can do this, then increasing the time each time would be the goal. Even if he cannot be off the vent full time, if he were able to work toward the goal of being off during the day, on at night, or even off completely for several hours daily would be a significant gain in his pulmonary health, with a significant psychological benefit as well.

    (KLD)

  3. #3
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    I'm grateful for the feedback.

    Are you referring to the "Respiratory Management Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals"?

    I am the primary caregiver, but know little about how to respiratory management (tho I know more than my family members) - is it possible to wean my Dad at home without experts?

  4. #4
    Quote Originally Posted by Joey_SF View Post
    I'm grateful for the feedback.

    Are you referring to the "Respiratory Management Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals"?

    I am the primary caregiver, but know little about how to respiratory management (tho I know more than my family members) - is it possible to wean my Dad at home without experts?
    Very doubtful. Even pulmonary specialists without SCI experience or knowledge would have a problem doing that.

    (KLD)

  5. #5
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    If it can't be done at home, then what options are available for my Dad?
    Last edited by Joey_SF; 07-22-2012 at 12:14 AM.

  6. #6
    I am assuming he has a trach etc.. I think they are telling you he will most likely be vent dependent unless more function comes back(and this takes a while if it does and with his age and don't know other factors). C1-4 controls the diaphragm and you must have it working to breathe. And you really need the other muscles in chest to breathe effectively and to clear lungs and cough or you get pneumonia, mucous plugs etc...( and abdominal muscles) But there are things such as bedside vent and portable vent ( sits on back of the wheelchair) when up in wheelchair- quad cough etc.., deep suctioning... that must be done and you can be trained.
    It is good that he has some breathing on his own- but the WOB- work of breathing- tires people out. Is it both sides or just one? or do you know?
    They would/could Consult the Pulmonologist and he would come bedside-- if he won't or they won't then??? he isn't the right pulmonologist. But I would speak with his team first---- our acute SCI doctors NEVER consulted a pulmonologist but they were "Spine SCI Specialists" unless some strictly pulmonary issue they couldn't handle.
    But you could request (Demand) a Pulmonary Consult and then he should/would come to the hospital. But I would speak with the team /attending first. !!! Every pulmonologist ( who is first an Internal Medicine MD then pulmonology sub specialty ) has some SCI experience but get one who has ICU/hospital/weaning experience and not just office experience.
    Maybe he could atleast explain things to youbut really your current team knows him best.
    There is something called a phrenic nerve pacemaker but we really don't use it much any more and very few people are candidates.
    Also... I know this sounds not very hopeful but there are numerous people who have portable vents on the back of their wheelchair and function in life. And the other problem would be age and other medical issues i.e. heart etc..
    Goal; atleast can go out and about and not be hospital /nursing facility bound.Go outside and see the weather etc..
    So unless unlimited wealth,,, a nursing facility would be involved- usually a "skilled" nursing home after rehab and long term care. I would look for one close to your home and you and all family/friends possible get trained and get all the resources so that you could pick him up/take him out etc...
    So...You need to learn how to suction, monitor vent/, bag patient in case of emergency--- when the machine goes crazy or you just don't know--- you use the ambu bag and hook up to oxygen if you have it!! Suction- so you always have to have the ambu bag,oxygen and portable suction device with you at all times.But it is just squeezing the bag about every 5 seconds! Suctioning- scary at first but.... you sound very determined!
    Portable vent when up and bedside when back in bed (prevent mucous plugs/pneumonia!!). Especially the portable vent so he can be up and around with you and go around, outside and maybe places if you had an adaptable van!!!
    Under stand oxygenation( signs of issues) , quad cough, deep suctioning etc... and
    do they have him on a talking device... communication etc....
    The guidelines is excellent! And write down questions.Look at drawings etc..
    I hope someone will chime in with their experience.... You might think about posting on the other forum -Care- for those who have been in similiar situations for years.

    CWO

  7. #7
    Don't know how relevant this will be but several years ago post pneumonia my wife was having great difficulty getting weaned off trach. They left trach in and gave her trials w nasal cannula and low O2. She was unsuccesful due to requirement for frequent suctioning and difficulty getting oxygenated on cannula. Turned out that the standard trach was taking up so much space in her small airway that she could not breathe around it. They installed a child's trach and she was then able to succesfully use cannula and need for suctioning dropped off. This gave them confidence to remove trach altogether. Her condition improved radically almost immediately. It appears all the need for suctioning was related to presence of trach. She was discharged and within months was weaned off all supplemental oxygen.

  8. #8
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    Thanks for the great feedback.

    1) In early month 4 after his injury, it was discovered that his right diaphragm was moving 20-30%. The left was little or none.

    The recommendation was to re-test after he left the facility - but there's been no follow-up. In month 4 and 5, doctors at the next facility just assumed that his diaphragms were not moving -- and they claimed that a test was not necessary and it was better just to "go for it." By the end of month 5, they claimed that my Dad could not wean.

    But, I was wondering - logically, shouldn't they wait until or double check if there's movement before trying to wean?

    Also - they mentioned that his vent was not very suitable for both weaning and the Passey-Muir - so we needed to make a choice. But, they added that that if my Dad could wean, he would be able to breathe "over" the vent.

    2) Wow. After waiting well over a month for the pulmonologist appt and leaving messages about 'recognizing-his-stellar-qualifications-but-do-you-have-SCI-experience (but never hearing back, except via the nurse), I finally faxed the pulmonologist (and cc'd his primary doc and Case Mgr who also tried to call the Pul) about the specifics of what we were looking for and if it's advisable (HME, new vent, cough assist, test diaphragm movement, etc).

    The pulmonologist's office assistant answered back that the pulmonologist did NOT have experience with high-level cervical injuries. This was less than 48 hours before the appointment!

    Heavens...I don't understand why he didn't answer earlier. :-(

    3) So, yesterday I looked for recs.

    Doc 1 specializes in chest and sleep disorders. It was wierd -- a friend's Mom (a doc) chose his name from looking at the listed pulmonologists from this clinic and at a well-known university). Then, the pulmonologist Doc in charge of this pulmonolgist clinic also gave me his name -- and mentioned similarities in equipment for sleeping disorders and SCI... would anyone know?

    I also recently got referred to a Doc 2 who has worked in a SCI unit. I've spoken with him and he wants to speak more about my Dad's situation...

    He also mentioned that weaning is usually done in an in-patient setting, not outpatient.

    4) CWO - please elaborate - why are few people candidates for the diaphragm pacer (Synapse, FDA approved) and why isn't it hardly used anymore?
    Last edited by Joey_SF; 08-03-2012 at 07:51 PM. Reason: Typos

  9. #9
    It's true that weaning is usually done in the inpatient setting. At least it sounds promising that the 2nd pulmonologist seems vaguely interested.

    What are the closest medical centers to you?

    Have you given up taking him to Santa Clara Valley Medical Center and just admitting him for rehab/vent weaning?

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