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Thread: trach and feeding tube care

  1. #1

    trach and feeding tube care

    Hi,

    I am trying to get information on caring for someone at home with a trach and feeding tube. She has MS. We have cared for her at home for seven years. It looks like she will need to remain on the trach and feeding tube for quite a while (maybe forever). She is breathing well on her own but she has a lot of secretions. They are giving her a medicine in patch form to help her with her secretions. Does anybody have any suggestions of antyhing that might be done to get her off the trach and feeding tube? I am also interested in the experience of others in dealing with these at home. We are not sure we can manage. She may have to go to a nursing home at least for a period of time.

  2. #2
    Member brokeneck's Avatar
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    When I was in hospital,secretions were a major problem.They finally decided the trach was causing the secretions.They removed it and I've had a few episodes of choking since,but not bad.
    Last edited by Obieone; 02-12-2008 at 09:55 AM. Reason: Font too large!

  3. #3
    How old is this person and how long has she been using these items? I require the trach for breathing, but haven't used a feeding tube in decades. Why was she put on the trach and feeding tube?

    The more you can tell us, the better we can help you.
    C2/3 quad since February 20, 1985.

  4. #4
    With MS, the disease can progress to the point where the person no longer has a functional swallow and it is unsafe to give anything orally. This generally requires a feeding tube, which should be a PEG (through the wall of the stomach) not through the nose. Once the swallow study shows that aspiration is occuring, it is very unlikely that the person with MS will get back the ability to safely eat orally again.

    It is less common to need a trach unless the person is on a ventilator or has very weak breathing muscles. Is this the case? Has she decided if she wants a ventilator if that time should come? Does she have a clear advanced directive on extraordinary measures?

    Aspiration pneumonia is the most common cause of death in those with MS. Good pulmonary toilet (assisted coughing, postural drainage and precussion, etc.) are critical for maintaining good pulmonary health (as well as flu shots and avoidng those with pulmonary infections and colds).

    What insurance does she have? Medicare may consider her to be homebound and in need of skilled nursing care with this complexity of care. Have you asked for a home health agency referral? Even if they don't come forever, the RN can teach you how to safely management both the trach and tube feedings (as well as bowel, bladder, skin care and medication management) in the home setting. Also, if she is eligible for Medicaid she may be eligible for some PCA care. Have you looked into this? This would give family members a partial break and respite so you can get your own batteries recharged and not burn out.

    Try to avoid a nursing home. Most are hell-holes and she will NOT get the care and attention there that you can provide. My mother also has MS and the 6 weeks she had to spend in a nursing home one time (with more function than your family member) is amoung the worse times in her life, and we hope to never have to do that again. The sad thing was that she was in the "best" nursing home in their community!!

    (KLD)

  5. #5
    Hello,

    Thank you all for your input. She just turned 59. She has been on the trach since June. She was in the hospital to get steroids to treat the MS. While there, she aspirated. She was placed on a vent. She was weaned off once and then developed a very bad infection in rehab. She had to be taken back to the intensive care unit in September and placed back on the vent. She has been off the vent for quite a while. Before all of this happened, she was breathing on her own and eating regular food. She denies any problems with breathing or eating before this incident but the doctors believe she was having subtle problems for quite a while that reached a crisis point.

    She has Medicare plus a Medicare supplement. She will be elgible for Medicaid when she spends down. The social worker has said that home care could be provided twice a week for a few hours and we believe we would need more than tis to manage at home. She really wants to come home and we much prefer the same. I think we can manage sunctioning once a day. She has a peg for feeding. The nurses have told us this needs to be checked every three hours. My main concern is getting up with her every few hours at night. I work long hours and get up very early. I do not believe I could manage getting up with her several times a night for the long haul. Her husband cares for her during the day and I (daughter) do the caregiving after work in the evening and at night. Her husband has physical limitations (heart problems). He would not work for him to get up with her at night.

    I am hoping for the best and in need of support and information. None of us want to see nursing home in her future for the long haul.

  6. #6
    Hi wwmm!

    There are several ways to manage a peg and the feeding - I don't believe all of them requires the checking every 3 hours, night included. Sleep for both patient and carer is certainly a concern, so a different method might be decided when going home than in hospital. As this thread is a bit old, I hope you have got more information and support by now?

  7. #7
    My son was on a feeding tube for 9 years, starting at infacy. He has aspiration issues and we frequently used a suction machine. Specific to the feeding tube, the care was simple and straight forward. He was not successful with bolus feeds due to reflux and aspiration so we used a Kangaroo pump and fed him at a slower rate over several hours. We did this 4 times a day with his night feed being the longest. We used a baby monitor to alert us to problems as the machines alarm if there is a kink, disconnection or formula runs out. Due to his level of throat and tongue motor dysfunction (dysphasia) we worked with a OT as well as a speech therapist to teach him to chew and swallow. Because his swallow studies were severely abnormal for several years, he used the feeding tube almost exclusively. The studies determined what was safe. Food was thickened using Thick-It and he was slowly and painfully taught to eat and swallow. We were clear that this might never be the case.

    Hspital routines and home routines can vary greatly. We followed calorie count but also fed him when we were eating and he joined us at the table.
    Eating is social so it is important to maintain the social aspect.

    Hope you were able to bring her home. If you have other questions, or still need guidance, I would be happy to help.
    Every day I wake up is a good one

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