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Improving morale, wheelchairs, diets and passey muir valves

appi101
appi101 Member Posts: 2
First Comment
Hi

My father is in India and he had a car accident that damaged his spine. He spent eight months in the hospital and is now at home. His accident was in January 2019. 

He is quadriplegic (with no sensation below his neck). He is on a ventilator (connected via a tracheostomy). He has a catheter for urine. We have nursing staff that helps take care of him. Medically he is stable - the only issue is that his blood pressure fluctuates - especially when he is made to sit with a neck support it tends to drop to low numbers (80/50 etc).

The primary challenge we face (exacerbated due to covid) is understanding rehabilitation tools and techniques that are available. 

He primarily spends his day watching television. While he can move his lips etc there has been a marked downturn in the amount he interacts with us over the past few months.

I have a few specific questions with respect to care - having posed these to various doctors here in India without much success.

1. What are some ways to motivate him further? What are activities we can do together? We read the newspaper, watch TV etc but are at a loss on what are the other steps.

2. We've been working on getting him to a wheelchair. The guidance we have is that we make him practice sitting on the bed (supported by us) and make sure his blood pressure stays stable before putting him on the chair for some time. Are there any other things we should be aware of?

3. He is currently fed through a ryles tube through his nose and his diet was formulated with a dietician. I am not sure if he can be given food to eat directly, the impact it has etc. 

4. In my reading I've noticed that Passey Muir valves have been used in Canada and the US on patients connected to a ventilator via a tracheostomy. On consultation with several specialists here the recommendation is that he needs to show some signs of breathing by himself prior to being on a Passey Muir valve. These are contradictory - can you help explain or point me to resources on how to try a speaking valve?

Thank you
Aprameya

Comments

  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 149 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hello, Aprameya, it is nice to meet you over the internet. 
    First, lets discuss the low blood pressure with sitting up. This is common with individuals who have spinal cord injury. Over time, the blood pressure will lower but right now, what your father is experiencing is orthostatic hypotension. After SCI, it is difficult for the brain to regulate blood pressure. Typically what happens when we sit, is that the blood vessels in the lower body, especially the legs will contract to send more blood to the brain when changing positions. This message does not get to the legs after SCI. What is done is to use compression stockings and an abdominal binder which squeezes the lower blood vessels to push the blood up to the brain. The stockings should go from the foot to the thigh and should be worn 23 hours/day.  Ace wraps or elastic wraps can also be used from feet wrapping up to thighs but the stockings stay in place better. Some individuals will need both stockings and wraps for awhile. The abdominal binder should be on prior to getting up and kept in place while sitting. It can be released when laying in bed. Now, this will not immediately solve the problem, but it is a help. You will still need to start by elevating the head of the bed just a bit, let his blood pressure adjust. This should be done slowly. Then, later in the day, try again. You might take several days or even weeks to reach sitting up. In the meantime, his legs should dangle over the side of the bed, just a bit at first, then increasing like you did with the upper body. In the rehab setting, we would use a tilt table to accomplish this as the head can be raised as the feet are lowered. Sometimes it can take a few weeks for a person to adjust to this. At your father's level of injury, it would not be to his benefit to attempt for you to hold him up at the side of the bed. It is too easy to slip off the side. If you have a reclining wheel chair, you can make that as flat as possible and try elevating and lowering his feet in the recliner. Sitting can take a long time to accomplish but it can be done. It can take a few weeks to as much as a couple of months. You cannot rush it.

    Motivation is difficult in such a drastic situation. Can you move his bed so he can see out the window or move his bed outside in good weather? You will have to monitor his body temperature as at his level of injury it will not regulate on its own so he will need to be outside for a short time and not in the heat or direct sunlight. Any interaction you, your family or friends can have to engage him will be critical. People can talk about their lives, things that interest him, children, grandchildren, neighborhood happenings, sporting events, art, music whatever interest him. You can also read to him or have him engage in a simple game but you will need to do the physical aspects of it. He can blink or move his lips as to what his move will be. Some people use their eyes to indicate what they would like to do. The more time someone spends with him, even if it is watching tv together will let him know that he is still a person of worth.

    Typically, food and fluids cannot be given with a trach, even if a speaking tube is involved. This would have to be done by someone with education in the process and when he is much further along. The trach is an open conduit to the lungs so that is where the food or fluid would directly go,

    A passey muir or speaking valve is probably not in order right now. It is difficult for me to suggest strategies because I do not know much about your father so I will talk in generalities. Secretions have to be low to try one. The work of breathing is much harder even on the ventilator with a speaking valve. It has to be introduced slowly. The valve can be restrictive. Since the ventilator is what is breathing for him, you do not want to obstruct that.

    For communication, a very simple communication board can be made with yes/no and a few other words that he might use. Only just a few as he will need to use his eyes to point to his responses. Some communication boards are so complex that you cannot tell the person's response. A very simple one will do. You can even make it yourself with cardboard.

    That should get you started. Be sure to check this site for information sheets that will provide further information and more detail. You have already taken the first steps with this email. I would imagine you have taken many more prior to this but you are on your way now. It is lucky he has such a faithful daughter. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • appi101
    appi101 Member Posts: 2
    First Comment
    Hi

    Thank you so much for your reply. It is great to have someone with experience to talk to and get another source of advice from.

    We are spending time with him - he does like to listen to books and the newspaper and watch a movie or listen to music. Our current focus is to encourage him to communicate his preferences - he is able to move his facial muscles and blink. He used to tell us what he wanted but his interaction has reduced over the last several months. At this point we are trying to encourage him as well as highlight the next steps - hopefully we will be able to take him on a wheelchair, atleast in the house over the next few months.

    I have a few more follow up questions:

    1. We need an easier way to brush his teeth. Right now, the nurses who care for his physical and medical needs use a cotton gauge dipped in mouthwash to scrub the teeth but he bites down on it. It is hard to understand why - it could be because it is too hard or he doesn't like the mouthwash etc. What are some other ways to brush his teeth easily?

    2. The similar challenge exists when suctioning him orally. He tries to swallow or spit out saliva but sometimes there is some in his mouth. He has now started biting down on the catheter when oral suctioning is being done. Is there a better way?

    In general, one of the challenges we have is finding resources on taking better care of him. Are there books or resources for caregivers that help explain best practices on taking care of bodily and daily needs for someone in his condition?

    Once again, thank you for responding to us.

    Aprameya

    PS: I'm his son :). My sister and I are both posting here and we are tag-teaming his care!
  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 149 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, Aprameya, It is nice to hear from you. 
    Here are some thoughts about your follow up questions.
    There is a toothbrush that attaches to the suction device. You can brush teeth while the suction removes the residue so it is easier and more efficient. 
    About the biting, this sometimes occurs in people who have spasticity or perhaps some confusion about what is happening or as a natural avoidance to suctioning. Suctioning can be uncomfortable. There is a device called an insufflator which removes secretions more gently. However, can be difficult to get accustomed to using it as it has more of a 'takes your breath away' feeling. Not everyone can use it and it is a rather expensive device.
    I think the most comprehensive care guide is from the Christopher and Dana Reeve Paralysis Foundation:
    https://www.christopherreeve.org/living-with-paralysis/free-resources-and-downloads/paralysis-resource-guide
    It has every topic needed in it. You can look up the topics you want. There is more detailed information on the Reeve website. But the book will get you pointed in the right direction. It is free, you just download it.
    Be sure to keep in touch. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

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