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Thread: New SCI to my sister

  1. #21
    Just checking on how things are going...It was wonderful that the church has given you a roof over your head, especially being able to have the dog there. Pray that Beverly has made more progress...judy

  2. #22
    Junior Member
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    another update

    Wow! Was it really ten weeks in ICU??? Somehow we are all still mostly sane. Beverly got off the vent about six days ago, spent four nights in a step down unit and tonight is her second night in a regular room. I am missing all the monitors. They changed out her trach a couple days ago to a cuffless one. She has oxygen flow by or something like that and it makes way too much noise. I have started suctioning her myself! She has needed more frequent suction the last two evenings and we don't know why. I haven't found anyone who can tell me how long it might be until the trach tube (and PEG) can come out for good. Still hoping to get to a rehab facility before Christmas...Her upper body strength and control are improving almost every day. She fed herself a turkey sandwich from home.

    Thanks again for your help and encouragement!
    Chris A.
    (Madmaddmom - i sent you a pm)

  3. #23
    Christina, I'm so glad she seems to be making steady progress...truly great news!!!
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  4. #24
    The more you suction, the more secretions you can have. Have you learned how to do quad coughing? More shallow suctioning is better if you can get secretions up that way. A Cough-Assist machine is also invaluable for this. Is she getting IPPB or any other breathing treatments?

    It is good she is on a cuffless trach. I assume she passed her swallow evaluation without it if she is eating. Next step is to downsize the trach to a 6 (be sure it is not fenestrated). If she can get off the blow-by oxygen and be only on humidified room air, then they can start capping the trach for short periods (starting with 1-2 minutes, building up to as long as tolerated a number of times during daylight areas before trying capping at night). Is she using the Passey-Muir valve much to talk? The more she uses this, the better as it will help prepare her for capping.

    The PEG can come out if it has been in at least 30 days, and she is taking all food, water and medications orally.

    All of this can also be done in a SCI rehab program. Where are you trying to get her admitted?

    (KLD)

  5. #25
    Junior Member
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    Oct 2008
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    northeastern oklahoma
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    thank you sci nurse!

    Thanks for the info! She started out on a size 6 trach so I guess then she would step down to a 4? She is on the PM valve about 30-45 minutes a day but she doesn’t really like it, and since we have gotten very good at reading her lips it hasn’t been necessary for communication. I’ll tell her she NEEDS to use it to help get ready for capping the trach.

    They used the Vest on Beverly when she first got moved to Oklahoma, but it caused her heart rate to go up around 160 and stay up for a couple hours after treatment. I think it has something to do with her pacemaker, but no one else does…They used the cough assist machine for a while also, but not since she has been off the vent. Unfortunately it seems the cough assist unit is only as good as the tech that is operating it, and only about one out of four seemed to know what they were doing. She is getting four IPPB treatments a day and some help with quad cough. Today they took her off oxygen and have just the medical air and humidifier. She is sat’ing at 94 over 12 hours now. They plan to remove the peg in a couple days.

    We are trying to get Beverly admitted to Jim Thorpe rehabilitation hospital in Oklahoma City. Today an “assessor” came over and we hope to hear something tomorrow!

  6. #26
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    northeastern oklahoma
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    more good news

    Beverly was moved to Jim Thorpe Rehabilitation Hospital in Oklahoma City on Dec 8th. Her progress has been incredible! The Peg is gone. The trach will be gone today or tomorrow! She is buzzing all over the place in a power chair. She sent me an email today that she wrote herself!!! She is learning to turn herself over. She has worn her own clothes and undies for 10 days. Probably the thing she has most enjoyed is real showers after almost 3 months of bed baths.

    Someone who heard about Beverly's story has donated a power chair for her. My brother (a builder/carpentor) is waiting on a home visit to begin modifications that are needed for Beverly to come home. (no idea about her discharge date yet) I am planning to give her my van if she needs it (good excuse for me to get a new(used) truck!).

    Just wanted to share the good news about her progress.

    Happy Holidays!

    Chris A.

  7. #27
    Quote Originally Posted by ChristinaA View Post
    Beverly was moved to Jim Thorpe Rehabilitation Hospital in Oklahoma City on Dec 8th. Her progress has been incredible! The Peg is gone. The trach will be gone today or tomorrow! She is buzzing all over the place in a power chair. She sent me an email today that she wrote herself!!! She is learning to turn herself over. She has worn her own clothes and undies for 10 days. Probably the thing she has most enjoyed is real showers after almost 3 months of bed baths.

    Someone who heard about Beverly's story has donated a power chair for her. My brother (a builder/carpentor) is waiting on a home visit to begin modifications that are needed for Beverly to come home. (no idea about her discharge date yet) I am planning to give her my van if she needs it (good excuse for me to get a new(used) truck!).

    Just wanted to share the good news about her progress.

    Happy Holidays!

    Chris A.
    I'm so happy to hear this! It's all great news! I remember my first shower after nothing but bed baths too...I must have sit in the shower chair for an hour (exaggerating) just letting the warm water pour over me...what a great feeling! Congrats to your sister for such great progress.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  8. #28
    Great news! I never did get the pm...we need to catch up! Would love to meet and take you to lunch...35 to 33 isn't much outa the way...maybe 20 minutes, think about it! Have a Blessed Christmas! judy

  9. #29
    Junior Member
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    Oct 2008
    Location
    northeastern oklahoma
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    personal care assistant wages?

    My sister left rehab about a month ago and is back in her home. We took out her whirlpool tub and put in a roll in shower that is working out okay. We have are taking her on public transportation to physical therapy three times as week that we are paying for ourselves since there is no insurance or medicare. She had to go to the ER on friday for very high DIG levels and spent the weekend in the hospital. She is back home now and so much better. We have had a lot of learning to do, and it's been overwhelming at times, but we will manage.

    We are thinking about looking into hiring a live-in aide or part time aide. I have no idea what wages we should expect to pay. Can anyone give me an idea for each of these circumstances? (I did a search but couldn't find what I was looking for, and couldn't figure out what forum to post this questioin on, so just put it here.)

    I just got a wireless router installed at my sister's house and ordered a new laptop for her. I have the Dragon software ready to install when the new computer arrives, and hope she will be posting here herself before too much longer. She can type a little on her own with adaptive devices, and we will encourage that, but I know the voice software will make things so much easier.

    Thanks much,
    Christina A.
    personal for madmaddmother....
    I tried to call, email, and pm you, but haven't been successfull. I took twenty gift bags to the second floor waiting rooms at OU Med Center on Christmas Eve.

  10. #30
    I assume you are talking about private hire/pay PCAs rather than from an agency, which would cost you an arm and a leg and still not be able to do all the required care.

    PCA (personal care attendant) wages differ by parts of the country, just like other wages. In my area (SoCal) they start at $12-14/hour and go up from there for part-time or full time. Live-in is negotiable when you provide both board and room as part of the compensation, and is usually paid per day, week or month instead of hourly. Live-in is usually the most difficult to recruit as well, as many good PCA candidates have families and don't want to live-in. Consider multiple part-time people as easier to recruit. We use Craig's List a lot. You may want to look at the Caregiver's forum for some tips on recruiting, interviewing, supervising, back-up plans, and when needed, firing PCAs. A good book I can recommend is this one:

    http://personalcareattendants.com/atndtoc.htm

    or this one:

    http://www.pva.org/site/News2?page=NewsArticle&id=8115 (free)

    Check out your local ILC (independent living center) for advice on PCA wages in your area and they may also have leads on people looking for this type of work. With the economy going the way it is, it has gotten easier recently.

    http://www.ilusa.com/links/ilcenters.htm

    (KLD)

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