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Thread: Permanently on vent?

  1. #1

    Permanently on vent?

    Anthony was admitted to the hospital last December because pneumonia in his right lung. I can't remember if they sent him home with a course of antibiotics but they did send him home with a nebulizer and albuterol to be taken for 14 days. Because he was having such a hard time breathing in the hospital they did put him on a vent just for some support to ease his breathing so he could have a easier healing time while in the hospital then removed it and he came home. He does not use oxygen or a vent at home he has a trach but is usually just open stoma.

    January 6th he was again having a hard time breathing at home and we took him to the ER after many hours they found that he was losing blood somewhere and after several days found out he had a duodenum ulcer and had to have surgery. By that time he had over 12 units of blood transfused by the time they got to the surgery he again had to be on the vent for just some support they found ecoli in his sputum and also had a uti. They had given him tons of fluids and with that and all the new blood he had edema everywhere again he had to be put on the vent for just support because it was hard to breathe until some of the edema went away.

    He was released from the hospital Saturday January 26th yesterday again he had hard time breathing we brought him to the ER today they have seen that he still has fluid in his right lung and swollen hand and legs and feet they are saying they're not really considering it pneumonia but lots of fluid again they put him on the vent for just some support for the hard breathing

    I'm going back and forth with the doctor though because the doctor is telling me that history with spinal cord injury patients is their muscles can get weak for their lungs because of atrophy and Anthony could possibly have to be on the vent permanently. I have never heard of this he has never had a problem with breathing until all these issues came up is there such a thing as a spinal cord injury patient just losing muscle tone and having atrophy and therefore having to go on a vent. He is complete c4,5,6 and has been since 2003. His left diaphragm was always weaker than the right and is higher. I cannot believe this Dr is telling us this. Some advice would be appreciated.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  2. #2
    Is the hospital you are taking him to a teaching hospital, a trauma center, and/or has a SCI Model System hospital affiliated with it? Not all pulmonologists or ICUs are expert at the specialized ways that vent weaning must be done in those with SCI, different than ABs. While it is true that the longer he is on the vent, the harder it is to get off again (due to atrophy of the diaphragm, not of the lungs), weaning programs that promote sensible respiratory muscle strengthening (primarily diaphragm) are critical for this process.

    I would also want to be sure he is not silently aspirating. He should have a swallow study done during this hospitalization. In addition, we would want to have him long-term on CHG oral care to reduce oral bacteria, which are easily aspirated and can lead to pneumonia. An e. coli pneumonia like this would make me very suspicious that there is a component of aspiration to his repeated pneumonias.

    You may need to get him moved to a facility that is more expert in this. I would certainly want to be getting at least a second opinion from a pulmonologist, and ideally, also a SCI physician, who are very experienced and knowledgeable about SCI respiratory management.

    I would also recommend that you download and read this document:
    http://www.pva.org/atf/cf/%7BCA2A0FF...Management.pdf

    And that you download this and insist that the pulmonologist you are working with read it completely:
    http://www.pva.org/atf/cf/%7BCA2A0FF...pg_resmgmt.pdf

    Once off the ventilator, he should go through a rigorous regimen of diaphragmatic strengthening exercises, and probably continue to do this long term.

    (KLD)

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    Is the hospital you are taking him to a teaching hospital, a trauma center, and/or has a SCI Model System hospital affiliated with it? Not all pulmonologists or ICUs are expert at the specialized ways that vent weaning must be done in those with SCI, different than ABs. While it is true that the longer he is on the vent, the harder it is to get off again (due to atrophy of the diaphragm, not of the lungs), weaning programs that promote sensible respiratory muscle strengthening (primarily diaphragm) are critical for this process.

    I would also want to be sure he is not silently aspirating. He should have a swallow study done during this hospitalization. In addition, we would want to have him long-term on CHG oral care to reduce oral bacteria, which are easily aspirated and can lead to pneumonia. An e. coli pneumonia like this would make me very suspicious that there is a component of aspiration to his repeated pneumonias.

    You may need to get him moved to a facility that is more expert in this. I would certainly want to be getting at least a second opinion from a pulmonologist, and ideally, also a SCI physician, who are very experienced and knowledgeable about SCI respiratory management.

    I would also recommend that you download and read this document:
    http://www.pva.org/atf/cf/%7BCA2A0FF...Management.pdf

    And that you download this and insist that the pulmonologist you are working with read it completely:
    http://www.pva.org/atf/cf/%7BCA2A0FF...pg_resmgmt.pdf

    Once off the ventilator, he should go through a rigorous regimen of diaphragmatic strengthening exercises, and probably continue to do this long term.

    (KLD)
    thank you kd. I will definitely pass this along, unfortunately no he is not in a SCI model system or even a teaching hospital for that matter or trauma center. I know he can get off the vent just didn't like being told from the intesivenist(sp?) that he may have to permanently be on the vent because SCI ppl usually get weaker as years go by. This didn't make sense to me never heard of that one. I would understand that if he wasn't using his diaphragm like always being on a vent but that is not the case he works his diaphragm every day. I will take special note on getting him some regimen of diaphragmatic strengthening exercies. He did have a swallow study a couple of weeks ago and passed. I don't know what long-term CHG oral care is but will ask and look up what silently aspirating means. thanks will keep you posted.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  4. #4
    CHG is chlorhexidine, an antiseptic. The nurses should be doing CHG oral care every 4 hours while he is on the ventilator, and there is some evidence that it is helpful for those who are not vented but are at high risk for pneumonia. This includes those who have known dysphagia, anyone with a trach, and anyone who with an altered level of consciousness. This is our protocol on the SCI unit where I work.

    (KLD)

  5. #5
    Quote Originally Posted by SCI-Nurse View Post
    CHG is chlorhexidine, an antiseptic. The nurses should be doing CHG oral care every 4 hours while he is on the ventilator, and there is some evidence that it is helpful for those who are not vented but are at high risk for pneumonia. This includes those who have known dysphagia, anyone with a trach, and anyone who with an altered level of consciousness. This is our protocol on the SCI unit where I work.

    (KLD)
    Thanks i will ask. I am just so mad at this point. I hate Drs. who treat SCI like they are useless and already dead. They don't realize that they lead full lives and seem to have this pity attitude towards them instead of helping them move forward. Sorry just very bad experience going on right now; and i've seen it before.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  6. #6
    Sorry to hear of this. I can only relate to this due to my experience with pneumonia and major complications. Wanted to add that at one point when I was having trouble weaning from trach, they decided to remove it and put in a smaller size. It was bigger than necessary and blocking my breathing, and I was clear sailing after the change. (I had never had breathing support before the pneumonia. Paralyzed from chest down due to Polio).

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