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Thread: They want my vent dependent son to be independent!

  1. #1

    They want my vent dependent son to be independent!

    Here's the thing...My son 28, married 7 yrs, a 3 yr old child is in his perhaps last 3 weeks of rehab with a C1-2 vent dependent SCI.
    They are requiring that he not have any one "stay with him" for a week at some point soon before he is released. For all these 3 mos. either his wife or I have been with him 24/7. Again, I say he is vent dependent...there have been times when we have been with him where the vent hose has popped off from the vent, the water traps from the condensation in the hoses needs to be dumped about every hour 24/7 in order for water not to collect in the hoses, hence restrict his breathing, I have had to assist getting the hand breathing pump thingy when the RT screwed up or did not know what they were doing and cut off Bryan's air source. Other things have happened that we do not feel "comfortable" leaving him totally alone there. He will NEVER be left alone after he gets home. They say they are doing this to make him more independent! HE IS DEFENSELESS!
    I think they should just have him be alone for most of the daytime hours. You know how night shifts are.....OR weekends.... Less attention and personal care. I am really concerned. What has your experience been...? Sandy

  2. #2
    Member Cbowen162's Avatar
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    Sandy, I'm not ventilator dependent, but I went through a program called New Start Healthcare in California and 90% of their clientele are ventilator dependent. None of them were left alone for very long. In California ventilator dependent quads are eligible for 24-hour nursing care. They don't necessarily need someone in the room with them 24 hours a day, but someone should definitely be on hand. Trust him to let you know when he wants time alone, he will tell you. Independence takes time. They have to suggest things like Independence just to cover their bases, but they CAN'T require you to leave him alone. They don't make the rules, he does through you.

  3. #3
    You do need to look at how long you can sustain being with him 24/7. It is likely to impair your health, and ruin his marriage. Is he eligible for attendant care? He does need to learn to get care from others, not just family, and to be alone but able to call for help in order to lead a life again. I know a number of people on vents who do not have a night-time person standing by their bedside, but available by call light. It is also important to find the ways to prevent the problems you note...there are ways to secure the vent tube, prevent water build-up, etc. Work with his professionals on this while they are available to you...it will be difficult and lonely to try to figure this out later on your own.

    CBowen, not everyone in CA is eligible for 24 hour attendant care...it is only for those eligible for IHSS, and even then it takes a big battle to get this...generally family is expected to provide at least 8 hours daily. if your income is too high for IHSS, you may not be able to afford 24/7 attendant care.

    (KLD)

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    Member Cbowen162's Avatar
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    My point was that those resources are available and you guys should look into it. I didn't mean to imply that everyone was eligible to receive those benefits. I just meant that they were available to the ventilator dependent quads. In California. Sorry if what I said was misleading

  5. #5
    Thanks for your contributions. I won't be with his everyday like his wife is. Now i only am with him on weekends while he is in rehab. He is eligible for 24 hr care I believe...so why would he have to have this "week of independence" where I think he is "risking his life" or at least his security. He is supposed to have a bed that moves or inflates or something so that he doesn't have to have pillows changed under him thru the night. Now they give him some meds thru the night...maybe just guifanesin for keeping his secrections down and loose. So, he shouldn't need much care during the night unless he gets sick or something. Sandy

  6. #6
    Member Cbowen162's Avatar
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    Don't leave him alone if you don't feel comfortable leaving him alone. He will be home soon, there will be plenty of time then to gain independence. Ask his therapist about a bed called the low air loss system. The mattress fills alternately from side to side. That was the bed that was supplied to me when I left rehab. Good luck

  7. #7
    Sandy,
    My 20 year old son was vent dependent for a few months. I don't care how old they are, I'm with you, I would not leave him alone. That is totally crap. What with the nursing shortage and all, what the heck!?!?!? My email is in my profile if you need to talk.
    Cathy J

  8. #8
    Cbowen, I think that may be the bed he will be getting. I know it is one that is to automatically adjust him.
    Thanks for your thoughts on the independence thing. I am just torn..I really feel there could be the happy medium of leaving him for maybe 8 hr. during the day. I appreciate your inputSandy

  9. #9
    Thanks Cathy,
    It seems what I am hearing since I also posted this on NM and someone there suggested going here is...The medical people say do it...but the ones who have been thru it or have had family members thru it...say don't do it.
    Sadny

  10. #10
    Senior Member kate's Avatar
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    Sandy, it sounds like you have reason not to trust the people who are recommending this. If your every experience with every single nurse, aide, RT, etc had been positive, would you feel differently?

    I would never do this. My husband was not on a vent, but he had no voice and not enough function to find the buzzer if it got lost in the bedclothes when he was in the hospital. He also had a collapsed lung and pneumonia, and no ability to cough on his own for many weeks.

    Like you, I saw lots of stuff that made me leery of leaving him alone at the hospital. I know some of the staff there took this to mean I didn't trust them to do their jobs, and they were so right! Tough.

    I think there is some protocol inside the hospital rules that says they MUST try to achieve as much "independence" as possible before discharge. That's their problem, though, not yours. If both your son, his wife, and you aren't comfortable, don't do it. Just my opinion!

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