The weight of the world.

  1. Just wanted to let it out in a safe place. My dad has been in the MICU for over a week with a GI bleed and septicemia...also on the liver transplant list. He grew out MRSA in his sputum, ascites, liver abscess, and blood. Basically overwhelming sepsis. They decided to aspirate a cyst on his liver and also placed a drain. He was considered a border and was possibly going to be transferred to the floor, but the next day he was really agitated and thanked his nurse for the care he got and everything they did for him...she was like "Where ya goin'? and decided to change his assignment to an ICU nurse instead of an acute care float. This was Thursday. He basically respiratory arrested and was intubated later that night. Huge hospital-acquired bilteral pneumonias (believed to be partly aspiration), bilateral pleural effusions, and the intensivist believes they may have somehow created a fistula during the liver aspiration procedure he had done. Has been on Levo which they were able to back off from, but his O2 requirements are increasing. They had him down to 60% FiO2 but 10 of PEEP. Decompensated during the night and is up to 80% FiO2 and 12.5 of PEEP, and has been retaining serious fluid since Friday...he's positive over 5 liters and third spacing like crazy....less than 10 ml/hour for urine output...they called me today to consent for an IJ catheter for Prisma CRRT.

    I am his healthcare proxy because my mom feels like she can't make an informed decision and doesn't understand what they tell her, even when it's in layman's terms. She's very overwhelmed, and I feel very inadequate making life and death decisions for my dad. I talked to his nurse today and I asked her to be honest as far as the CRRT and whether she thought it was futile, and she said in her opinion she didn't believe it would make much of a difference for him but that she has seen patients sicker than him recover with a transplant. She also said that he won't recover without a transplant, but he's ineligible for it right now because of the sepsis. Has to be off antibiotics for a week to be put back on. His blood cultures from 6/1 came back negative but his pneumonias are worse, they did a bronchoscopy and aspirated huge amounts of purulent secretions. My dad was a DNR prior to getting on the transplant list because he didn't want to live like this. The nurse said they will want to trach him in the next few days, but I absolutely know he wouldn't want that, and I don't want keep holding out for him for that 1% miracle chance. He watched his father die the exact same way from a medical error and it went on for almost a year before his blood pressure just wouldn't sustain even on max amounts of pressors. My dad has made it clear he doesn't want us to do that to him, but I also don't want to be too hasty since it's only been a few days. His nurse was very honest and said she doesn't know if he'll get off the vent at all without the transplant, definitely not soon or before getting a trach, and that he has very little hope unless the sepsis clears and he gets to the top of the list quickly. I just feel like I'm walking such a thin line. I don't want to be responsible for giving up on him too soon, but I know too much from a medical perspective to believe that his overwhelming sepsis is going to clear and he'll magically start improving, especially when he's on triple antibiotics and not responding to 2 grams of vanco BID. When do you say when? I just can't believe this is happening to him. I don't know what's heavier, my head or my heart.
    Last edit by NeoPediRN on Jun 7, '09
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    About NeoPediRN

    Joined: Jan '09; Posts: 959; Likes: 1,226
    RN; from US
    Specialty: 6 year(s) of experience in Pediatrics, ER

    22 Comments

  3. by   Tait
    You are under a nearly insurmountable amount of pressure at the moment and I hold your situation in my heart and mind.

    Within the paragraphs of your story it sounds like your heart knows what to do, and I think it was very wise of your family to make you his proxy. Give yourself a little time, give him a little time and then talk to your family. Use your compassion for your father and your medical knowledge to build whatever case you come to a decision on.

    Best of luck, keep your chin up, and may the powers that guide you continue to do so through this very difficult time.

    Sympathies,

    Tait
  4. by   Crux1024
    <<<<<<SARAHBETH>>>>>

    I will keep you and yours in my thoughts and prayers. Follow your heart and talk it over with the family. I wish you the best.
  5. by   ghillbert
    How terrible for you and your family. I'm so sorry. If you know your dad would not want a trach, then your decision is easier. I know my family know my wishes and I hope that they would respect them if I was ever in that situation.

    Best of wishes to you at this horribly difficult time.
  6. by   netglow
    One step at a time. Deep breath. Know that you are being thought of here! Hope this gives you a little strength.:icon_hug:
  7. by   madwife2002
    My heart is with you, you are in my prayers. I think you have a tough decision ahead and I wish you all the best in the world.
  8. by   Whispera
    You're in my heart and prayers too.
  9. by   canoehead
    What a helpless and horrible situation! I read it as a nurse thinking there's no way he'll recover from that, he has to survive long enough to get rid of the infection, and THEN be lucky enough to get a donor, and hopefully if there is a fistula it will stop leaking or you start the same thing over again. That's like less than 10%chance for each thing, and for all of them to happen at the same time, 1 in a thousand, plus avoiding all the other things that can go wrong at the same time.

    But if I think about it as being my Dad, well he's been strong before, if he can just squeak through on thing, and then he'll be that much better and maybe, just maybe, get through the next. It's just so tempting to keep on believing...

    I'm so sorry you're in this situation, and I know whatever you do will be done with love. Your Dad knows that too, that's why he asked you to be the one to make the choices for him. Big hugs.
  10. by   gonzo1
    I'm so sorry for your problems. I have seen many people taken off life support and still make it. I don't believe the ultimate choice is ours, I believe in a higher power.
    Just keep in mind everything your dad has said to you about what he wants. He discussed it with you many times to make sure that you would feel better when you had to help him in this situation. He knew that you might someday be in this situation.
    Best wishes to you and your family in this very scarey time. We will be praying for you
  11. by   leslie :-D
    Quote from SarahBeth
    but I know too much from a medical perspective to believe that his overwhelming sepsis is going to clear and he'll magically start improving, especially when he's on triple antibiotics and not responding to 2 grams of vanco BID.
    aw, sarahbeth...:icon_hug:
    i say give your head a rest, and listen to your heart.
    your 'head' has given you all the information you need:
    that his liver, kidneys and lungs are failing him.
    to hope for a miracle (i'm talking for the long run) is going to eat you alive.
    i don't know anything about your spirituality, but maybe a talk w/the chaplain would help?

    i went through this w/my mom.
    she had aml w/a dismal prognosis but opted for chemo.
    as a result of her white cells bottoming out, she developed sepsis:
    was vented and had a million lines going.
    both her onc and primary, were pressuring me/us for her to continue w/chemo IF she lived through the sepsis.
    meanwhile, bad news just kept on coming.

    knowing my mom so well, i could not see continuing w/txs.
    i could not see continuing with her so-called life.
    at the .000001% chance of surviving the sepsis, then the hurdle of overcoming chemo...again....
    all i could envision was a living hell for her.
    i wanted her to rest, to feel peace from those who loved her most.
    when i listened to my heart, i knew she was dying.
    it was the zillion, invasive interventions that were sustaining her only.
    when i listened to my heart, i knew it was 'time' to let go.

    and we did.
    and she (very peacefully) died 45 min later...
    surrounded in love and light.

    i have never regretted my decision...
    because i know she wouldn't have wanted it any other way.

    listen to your heart, sarah.
    you won't go wrong, honey.

    with a heavy and loving heart,

    leslie
  12. by   island40
    I have a chronic, incurable disease with no known cause and have told my children (19 and 22) that I do not want to be artificially fed. I am not sure if they will honor my request because I have so far been unable to convince them that starving to death and dying by dehydration are not painful (I have come close several times). I have directives in writing and my PCP knows what I want and I hope that my children are not faced with wondering if they did the right thing. I feel for you. Ask and God's wisdom will be given to you.
  13. by   catshowlady
    :icon_hug: What a difficult thing for you to be going through. My heart goes out to you.

    I think leslie is right, you have a good grasp of the facts and are being very realistic about your dad's situation. I think you have to decide how you feel about the intangible aspects of what it going on.

    I don't have any advice per se for you, but I will be keeping you in my thoughts, that you can come to a decision that is right for you and your family.
  14. by   NeoPediRN
    It's just so hard. I'm the only one who really knows my dad is going to die. I don't want to be responsible for telling my mom, whenever I gently break something to her she just falls apart. I'm not good with emotion, I never have been. I don't do crying and turmoil very well when it comes to my own family or own life. I just talked to my sister, who is younger and a little out of touch with reality, and every time I tell her something that isn't good that indicates he's really sick I feel like I'm a murderer in her eyes. She will fight off everything I tell her about his condition with an "it's okay" or "yeah but we haven't even given him a chance" or "it's only been a couple of days." The night I got called home to go to the hospital with my mom, my sister was freaking out that she wanted to come because she "was the only one who wanted to save him" and would fight for him if we wanted to make him a DNR. Her sense of denial is incredible, and always has been. I just almost wish the decision would be taken out of my hands one way or the other. I want to honor my father but I don't want to be a monster in the eyes of my family.

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