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    Am I doing the right thing?

    Mark has been very sick. He spiked a fever last week, and by the time we got him to the hospital he was having seizures. His temp was 104 for 2 days. He has an angry looking shunt site, but his testicles are very swollen also. He hasn't been with it for many days, and we called our sister home from France. I was so hoping when he heard her voice his eyes would pop open and he would give her the family look. No such luck. His fever still goes up at night some, but not as high as it was.

    Saturday the doctor asked what we wanted to do. What do I want to do? Options were stop dialysis, stop abx, stop feeding, turn off the vent any or all of the above. For anyone else, it wouldnt be a difficult decision, and we have all talked about it, and some have advanced directives on file, but Mark is so different from most people. In my heart of hearts, I really think he is still in there. He has fought tooth and nail to stay alive, and I dont know how, but he finds joy in whatever he can still do. If this were Michael, I would know in a heartbeat what to do.

    He is very calm, and doesnt seem to be in pain, and I just keep looking at him waiting to open that eye and give me a Sarah Palin. He is going to be so ticked off if he sleeps through Lucy coming home.

    Does anyone know of anyone who came out of something like this?

    #2
    .....
    Last edited by lynnifer; 14 Mar 2010, 5:57 PM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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      #3
      I'm so very sorry Andes, I can only really echo Lynnifer's post.

      However, from the way Mark talked about you on here he clearly had faith in your character and judgment, so much so that I'm sure whatever you decide to do it will be the right thing.

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        #4
        I too am so sorry. I wish I had the answers for you. I will keep you and Mark in my prayers.

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          #5
          Thinking of you.

          Comment


            #6
            ann i hope mark pulls thur if anybody can it is mark but im sorry you r goin threw this.

            Comment


              #7
              Oh Ann ..... I just knew something was up ... I was thinking about you and Mark this morning wondering why we hadn't seen any posts from your house lately !!
              .... it's all I've got .... stay strong ....

              Obieone
              Last edited by Obieone; 10 Mar 2010, 12:11 AM. Reason: Forgot the "k" !
              ~ Be the change you wish to see in the world ~ Mahatma Gandi


              " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
              Jane Siberry

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                #8
                I was wondering....... since no posts from him. in your heart of hearts...... go with that. you are close. seems you would know if he were gone.
                thinking of you and all of your beautiful family. a prayer for strength, and healing. Mark is a true blessing to care cure community.

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                  #9
                  Annie that's rough. I know from talking with Mark that he loves you and trusts in you to do what you think is right. All I can say is Mark seems full of life, and seems to very much enjoy it. I'll hope for the best for both of you, and your wonderful family. You all have really improved the atmosphere around here, at a time when many needed it.
                  Please donate a dollar a day at http://justadollarplease.org.
                  Copy and paste this message to the bottom of your signature.

                  Thanks!

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                    #10
                    Go over the things you and Mark talked about over the years, surely there were indications and if you still aren't sure, go with what your gut says. God is with you always.

                    Comment


                      #11
                      Oh, I wish I were better with words. What a terribly difficult decision to have to make. I have been thinking of you, since you said it was a tough week, and of Mark.

                      Can you ask the doctors about a prognosis? Has anything happened (brain damage, bone marrow suppression, etc.) that makes it impossible for him to recover? Or is
                      recovery still possible?

                      All I can think is, if he's fought so hard to live, if there's a chance, and if he isn't suffering, maybe wait a while and hope that eye opens?

                      I'm sure you will figure out the right decision.

                      Comment


                        #12
                        I was also thinking about Mark this morning. I know this is very difficult for your family, and my heart goes out to you. I agree that you have to go with your gut and with what the medical professionals tell you... but mostly your gut.
                        Please tell Mark that we are all thinking about him, and love him.

                        Comment


                          #13
                          I believe you will know when and if it becomes time to make those final decisions. I have been involved in helping to make this type of very difficult decision several times. One thing I knew was I didn't want to make a decision I would second guess myself to death about. As long as he is not uncomfortable, and it seems he's not, there is no harm in waiting. Miracles are possible, and doctors do not know everything. I believe if you are questioning, perhaps it is not time to make any final decisions just yet. My hope is that you won't have to. You and your family are in my thoughts.

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                            #14
                            Damn, I hate to hear this! I don't have any advice, as I'm sure you'll make the best decision. Please just know that you and your family are in my thoughts during this very difficult time.
                            "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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                              #15
                              Mark touched my heart and I'm sorry you are having to go thru this Ann ... this is for you both !!

                              Calling All Angels - Jane Siberry

                              a man is placed upon the steps, a baby cries
                              and high above the church bells start to ring
                              and as the heaviness the body
                              oh the heaviness settles in
                              somewhere you can hear a mother sing

                              then it's one foot then the other
                              as you step out onto the road
                              how much weight? how much weight?
                              then it's how long? and how far?
                              and how many times before it's too late?

                              calling all angels
                              calling all angels
                              walk me through this one
                              don't leave me alone
                              calling all angels
                              calling all angels
                              we're cryin' and we're hurtin'
                              and we're not sure why...

                              and every day you gaze upon the sunset
                              with such love and intensity
                              why it's...it's almost as if
                              if you could only crack the code
                              then you'd finally understand what this all means

                              but if you could...do you think you would
                              trade it in
                              all the pain and suffering?
                              ah, but then you'd miss
                              the beauty of the light upon this earth
                              and the sweetness of the leaving

                              calling all angels
                              calling all angels
                              walk me through this one
                              don't leave me alone
                              callin' all angels
                              callin' all angels
                              we're tryin'
                              we're hopin'
                              we're hurtin'
                              we're lovin'
                              we're cryin'
                              we're callin'
                              'cause we're not sure how this goes
                              ~ Be the change you wish to see in the world ~ Mahatma Gandi


                              " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                              Jane Siberry

                              Comment

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