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Thread: No sign of recovery 5wks 6dys. Help!

  1. #11
    Ashleigh, you might be right for all I know. Mauritius is in the Indian Ocean and it is a 21 hour flight to where you probably are in the US, a 12 hour flight to the UK, and the nearest that might have a specialised spinal cord facility would be a 4 hour flight to Johannesburg, South Africa. I do get your point about the importance of getting care at a specialised spinal cord injury centre/unit, but I don't see that he would get any better care to treat the septicaemia than he is getting now. If his septicaemia gets controlled enough, then we would certainly inquire more into the possibility of a move, if ever possible. For the time being, there are worrying signs concerning the septicaemia: since yesterday evening and today morning, my father's blood pressure has been getting way too low. I just hope that he responds enough to medication so that his vital organs don't get affected.

  2. #12

    Addendum

    I'd just like to give a report back about my father to all who have contributed in this discussion and to all who have followed it. He's had multiple complications - all of them taken in isolation possibly treatable. Looking at it from an overall point of view, pretty bad.

    The doctor has informed us that there seems to be fistula between my father's oesophagus and trachea which means that food is going into his trachea and air is going into his oesophagus.

    His blood pressure has become so low that there is some dysfunction of his kidneys.

    In over 6 weeks, all attempts at diminishing my father's dependency on the ventilator have failed.

    SCI nurse - yes, the neurologist is aware of all the techniques, procedures and protocols. He's tried his very best.

    My father has received the best of care possible here. Not one bed sore in over 6 weeks.

    Most important of all, my father has decided not to co-operate.

    It is his decision to make. Ours, as carers, to respect.

  3. #13
    Tracheal esophageal fistulas are most often caused by improperly managed tracheostomy tubes. Does he have one of these (vs. a nasal or oral tube)???

    I am sorry about what is happening with your father. At his age, medical complications are much more common after SCI, and septicemia and especially septic shock much more difficult to combat. If he already had pre-existing cardiac, pulmonary or kidney problems, this can cause additional issues. I hope they are keeping him as comfortable as possible, including pain medications, and that you and other family members can be at his bedside during this difficult time. Please come back and let us know how you are doing.

    (KLD)

  4. #14

    Preceding complication confirmed

    SCI Nurse, yes he does have a nasal tube through which he is fed as well as the tracheal tube. The hospital staff were quite bewildered at this type of fistula which is rare in the hospital he is in.

    My father did have preceding cardiac complications. In 2010, he had stable coronary artery disease, NIDDM and hypertension. He did not want a major operation and he was lucky enough to get a doctor who had an approach that was as non-invasive as possible in that he was getting medical treatment (which he was doing well on) and surgery was going to be planned only if symptoms became troublesome. He walked a lot, was on a strict diet that my mother prepared creatively and lovingly (that we all enjoyed!), kept up the beautiful sense of humour and love of life, interest in world news and affairs, watching football, enjoying music, and films.

    We are lucky to have such dedicated nursing staff at the hospital. They are making sure that he is as comfortable as possible and that he gets adequate pain relief. They have been real pillars of support for us.

    Life is pretty challenging at times. I have been through quite a few challenging moments in mine. I think this experience is the most challenging yet.... Despite all of this, I am so appreciative of the support we get from our family and close friends, from hospital staff, and from this forum that has been a source of information that I have leaned on very heavily in these last weeks.....

  5. #15
    Malika , why I asked you the question of being from India , was that malika is a very indian name , so I thought that if you were from India , then Indian spine injuries center in New Delhi is a very good facility for SCI . But Delhi would be about a 12 hour flight so its too long, maybe jo berg would be good idea.

  6. #16
    Quote Originally Posted by Malika Devi View Post
    SCI Nurse, yes he does have a nasal tube through which he is fed as well as the tracheal tube. The hospital staff were quite bewildered at this type of fistula which is rare in the hospital he is in.
    I was asking about the tracheostomy tube specifically. If the cuff pressures are not regularly checked and the cuff kept in the safe pressure range, it can cause the tracheal esophageal fistula you describe. Similarly, if the feeding tube is too large, it can contribute to this, esp. if used together with a tracheostomy tube cuff that is over-inflated. We require checks of cuff pressure on the trach cuff every 8 hours if it is continuously inflated.

    Did you ever get the Passey-Muir valve?

    (KLD)

  7. #17

    Tracheal esophageal fistula

    Thank you for the information SCI nurse. We are meeting his ENT doctor tomorrow so I know now what kind of questions to ask. The main question though is what happens now? Would he need any surgery? I know my father would hate that (Hasn't he been through enough by now?). To leave him with this fistula seems cruel at the same time. It would have been so useful to have the Passey-Muir valve so we could communicate more easily, if ever that were possible.

    Passey-Muir valves are not used here. We have had a hard time ordering one. A good friend of our family has been trying to order one in the US for days and days, but they only take orders from hospitals and doctors. Luckily this friend's son is a doctor. Today, we heard that he has finally received it, and it has just been speed posted to us here. It will take some days to arrive though. I hope it arrives when it is still useful.

    The hospital ENT doctor has shown interest in it, and I hope this will becomes a means to encourage its use here in such cases. We would gladly donate it to the hospital for them to try it out should it not be possible or useful in our case.

  8. #18
    SCI Nurse, now that I have thought about it, I suppose you asked about the Passey-Muir valve to find out whether the cuff is deflated or not? From what I learnt about the Passey-Muir valve, the cuff needs to be deflated for it to work.

  9. #19
    No, primarily I was asking about it to find out if your father has had an opportunity to try speaking with it to better share his feelings at this time, but yes, it must be used with a deflated tracheostomy cuff.

    (KLD)

  10. #20
    Sorry all of you. I've been absent to look after my father and go through the emotional journeys that carers need to go through.

    Here's an update: we, as a family and carers went through the difficult decision of following my father's wishes through - that is - contacting lawyers and doctors to see if there would be any legal way to get his ventilator switched off as he so much desired. The answer was "no" - too many legal constraints.

    When my father got to know of how much trouble we went to to get his wishes respected, he started to think about the prospect of giving the "recovery scenario" a try. So he has started to co-operate again.

    The possible fistula remains a mystery - it would be a pain to transfer him to a ward where it could be tested, but even if there is a fistula, there would be a need for surgery, which is out of question for the time being. They have fitted smaller tubes (both tracheostomy-wise and nasal tube-wise), and it has certainly made my father more comfortable.

    There is an issue with my father's left leg - there were a few skin problems on the top of his shin which resulted in a bit of infection, but the doctors and nursing staff are carefully monitoring it, and it is not out of control.

    He also has a mild bronchial infection at the moment which is being treated with another course of antibiotics.

    SCI nurse - the anaesthesists were very interested in the "Respiratory management" book that you recommended and are very interested in the use of a speaking valve in weaning protocols.

    In the case of my father, they are waiting for him to be well enough so that the speaking valve can be used safely. So we'll have to wait a few days yet, but my father is chuffed with the news (I'm being British here in expressions, but I'm sure you'll all follow the gist!) and is eagerly waiting for a tide to be able to talk to us directly.

    My father is also going through a process of "body awareness" that he couldn't go through before. He is mourning for the loss of his usual motor and sensory capacity and is learning to cope with what he has, and developing the strength to build on that. This is good news, even though painful - a kind of awakening in that he is having to come to terms that he might not die after all and that it would be better for him to work at getting better to be able to leave the hospital should he survive all the complications.

    My father is renowned for his will power and I trust that he will develop enough strength eventually to start fighting this epic battle if he believes in it. Your opinion, Dr. Wise, based on knowledge and experience, has really been of help here, as has the testimony of spinal cord injury fighters, and the experience of SCI nurses. By the way, you are right. The neurologist has confirmed that my father is ASIA C.

    I am visiting the family of another person who has had the same C5/C6 spinal cord injury tomorrow. But I think his is a "complete". I will share all I have learnt from you and recommend this site to them as a source of information, knowledge, inspiration and strength.

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