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    #46
    The ethics consultation was today, so it's doubtful Gabriela could have found an attorney in time to attend the meeting - but any future consultations should certainly include a lawyer. In the meantime, Gabriela, document everything. Make notes promptly after every encounter with hospital personnel - dates, times, names, circumstances.
    MS with cervical and thoracic cord lesions

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      #47
      Thank you all for your support and guidance. It was an immense help. After meetings with Ethics and Doctors, they have decided to leave us alone and support our decision. Not sure if we got through to them or they were afraid of a lawsuit; but at least they know we are not going to back away. We also filed a grievance and are getting an independent review. I think this made me realize how important it is for everyone to have a strong advocate or seek legal help.

      I am finally getting some time today to go buy a video camera as I think this is a great idea to record her awareness. Yes, thanks I am documenting everything. She still has an infection and fever so she is kind of out of it because of more meds.

      Will keep you all update in the days to come.

      Gabriela

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        #48
        Maybe they saw your determination, sincereness and unity as a family.

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          #49
          I am very glad to hear that you have made progress, Gabriela, and that you have filed a grievance and begun the process of gaining an independent review. I don't know if you have obtained legal counsel or if you have initiated these steps on your own, but I urge you to have an attorney on-board who can advise you as to your rights and answer specific questions in the days ahead. You are correct, it is of utmost importance for people to have strong advocates and legal counsel regarding health matters, especially when situations are as complex as the one you and your family are facing.
          MS with cervical and thoracic cord lesions

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            #50
            Oh Yes, an attorney is going to help us as I am sure there will be more need in the future. I wish I had gotten one earlier, but at least we are on top of it now. It is so sad but I have come to realize that hospitals/doctors (insurances) don't consider the lives of someone who they determine will be a quadriplegic as having a quality of life worth fighting for. I think people like my mom should have more care and medical attention. No one chooses to be in this medical condition and one shouldn't have to justify why we want preserve their lives.

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              #51
              Excellent, Gabriela, I am so glad that you have an attorney to help you every step of the way! Please continue to keep us posted, and know that you have a lot of online support as you go forward.
              MS with cervical and thoracic cord lesions

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                #52
                I'm so glad you have things rolling for your family, finally. The sad part about this all is that when someone is injured so suddenly, the family is tipped on it's ear and can only deal with the most critical decisions. As things settle, folks have time to deal with more far-reaching rammifications and decisions. You've done the best you could in light of the situation and I give you credit for your dedication to your mom and your perseverence. I sincerely hope it pays off for you all!

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                  #53
                  Hello Everyone,
                  My mom is now at a Sub-Acute facility. It is kind of like a nursing home but for people on a ventilator and feeding tube; and most people at this facility appear to be unconscious. It is not the facility that we wish she was at, but we had little choices. She gets only 15 min. of therapy a day, but at least she started opening her eyes again for several hours a day and appears to be conscious and listening to us. She wiggles her toes sometimes and it really appears to us like she is doing it herself versus reflexes. It mainly happens when we are talking in the room or we push her foot.

                  Overall she is more stable, but it does feel like we have hit a wall. She appears to be in locked-in syndrome. We move her body consistently when we are with her, talk to her, read to her, play music, but not sure what else to do. We don't loose hope and keep praying. Her insurance told us that she can go to an acute facility when she can do therapy for at least 3 hours but not sure at what point this would be for her condition.

                  This holiday season is pretty tough on us and gets us down. We really wish we could take her home which is one of our goals in the future. Many people have told us that it will be impossible in her condition, but I have heard some of you tell me you are home so I think it is possible.

                  Thank you,
                  Gabriela

                  http://www.caringbridge.org/visit/prayformaria

                  (mom's website)

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                    #54
                    Gabriela, I am deeply moved by your mother's website. What a loving family! I am glad that your mother is not in the same facility that was giving you so much trouble, and I hope that your goal to take her home will eventually be realized. In this holiday season, when sadness and hope intermingle, may you all know times of peace and understanding for your next steps.
                    MS with cervical and thoracic cord lesions

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                      #55
                      I am so sorry that happened to your mom.

                      I don't know much about SCI, but I've had a seizure disorder since I was a baby, so I know a bit about that. Phenobarbitol and Dilantin are both strong medicines. They can cause someone to be very "out of it" at first even when they are awake, and could also lower heart rate and blood pressure. The good news there is that a person's body gets used to having those medicines, and the side effects gradually go away. So maybe she will get more alert and coordinated as her body adjusts. I know that if someone had hit me with the kind of doses they probably had to use to bring her out of status (constant seizures) I probably would be so groggy and confused that I could barely blink on request, too.

                      I'll keep good thoughts for you and your mom.

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                        #56
                        Thanks for sharing your mother's Caring Bridge page with us. What a lovely family you all are.

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                          #57
                          Hello Everyone,

                          Glad holidays are over. It was a hard time for our family.

                          A few changes to my mom's condition. She can do facial movements and expressions and seems to have more control with closing her mouth which was always open before. All her expressions are of pain or sadness, crying so it is very difficult for us to see her. Also, it seems that she has sensation on her feet. When we move her leg or feet, if we push it back too far or in an uncomfortable position, she will push it back at us. Does anyone know if this could be her pushing it back and if it is a good sign or if it is still considered reflex?

                          Thank you,
                          Gabriela

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                            #58
                            Oh, Gabriela, how hard this is for every single member of your family! I have no idea what any of the changes you're seeing actually mean, and I hope that your mother will at some point be able to express herself clearly to you and the doctors. My hope and prayer for all of you is for clarity and wisdom in this difficult, difficult time.
                            MS with cervical and thoracic cord lesions

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                              #59
                              Gabriela, thanks for the continued updates on your mom. I know it must be very hard to see her in this condition. Is there any way that she could communicate using a picture or word board....or even yes/no cards that she could blink at? It's got to be immensely frustrating for her not to be able to tell you how she feels. You are doing all the right things for her and I commend you and your family for being so strong for her. Keep up the hard work and see what the future brings. I hope that she's able to move on to rehab someday and that you can find a way to bring her home.

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                                #60
                                Continued prayers, reading through what your family has gone through just breaks my heart...One very important factor that hasn't been addressed is the importance of making sure your Mom is being turned often, as a pressure sore can develop in hours...stretching her to prevent contractures...things the facility should be doing but often don't...I know your entire family is on this roller coaster, but remember to try and get the rest you need, and keep an eye on your Dad...

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