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  • #16
    Update on Beverly

    It's been five weeks now since my sister's injury. I sent pleading letters and made phone calls to everyone and every where I could think of. The top rehab facilities all said no. I finally got a response from the Oklahoma Governer's office and we got Beverly moved to OU Medical Center in Oklahoma City last Friday. She is back in ICU because that is the only unit they have for vent patients, so it seems like a step backwards. We are happy with her care there so far.

    She continues to have some problems with occasional high fever (105.8 highest!), no sleep, high and low heart rate (despite a pacemaker put in 10 days ago), edema in her legs and feet, and no appetite. We are able to communicate pretty well by reading her lips. She is spending 12 hours at a time on pressure support and we hope to try the oxygen collar soon. They have been using "the vest" on her since the transfer and it seems to be helping clear her lungs a lot. She has regained a lot of movement in her arms, but she is discouraged about the lack of movement in her fingers. She just had her first couple of occupational therapy sessions. She sat up in a bed side chair for a couple hours. She has an occasional spasm type movement in her right leg and foot.

    One of my sister's toured the Jim Thorpe rehabilitation facility in Oklahoma City, and we are hoping she can be transfered there once she is off the vent. (I know it was recommended she not come to OKLAHOMA, but we didn't find any other options with the insurance problems!) We applied for her SS Disability and it is all on track.

    Thanks again for your replies and pm's.

    Christina A.

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    • #17
      Hi new friend... I had to pick up a friend at the airport Tuesday night so decided to stop by and give you a hug....but, you'd left for a bit. Met your sis from Illinois and did a quick hello to Beverly...OSU saved my son's life so I won't bad mouth them...remember to BREATHE...and try and rest...Believe in miracles and know you have the strength to get through this...I got sooo tired of hearing that...but, it is true! sending hugs, judy

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      • #18
        Christina,
        Thanks for the update on your sister, and it sounds great that she is recovering movement in her arms, and that she is now sitting up for a couple of hours too. Keep us posted, and good luck.

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        • #19
          Sorry to hear this.I must have missed this on the news.I appreciate what she was doing for us around here.Hope everything gets resolved quickly.Best wishes.
          Be yourself!!!
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          • #20
            Would it help if I came to visit? My family just had a close close call, and I'd consider it a gift if I were given the chance to give back something good to the universe, right about now.

            Therte are worse places than Jim Thorpe. It's not my top 10, for sure, but it's far from my bottom 10.
            Blog:
            Does This Wheelchair Make My Ass Look Fat?

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            • #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

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              • #22
                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)

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                • #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

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                  • #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)
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    • #25
                      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!

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                      • #26
                        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.

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                        • #27
                          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

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                          • #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

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                            • #29
                              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.

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                              • #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)
                                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                                Comment

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