Sad and need to vent...

  1. edited
    Last edit by nursex20 on Mar 25, '05
    •  
  2. 9 Comments

  3. by   jeepgirl
    Sometimes we have to look at quality of life rather than quantity.

    She sounds like a sweet baby and a strong fighter. I hope that the rest of the time she has is spent happily with her momma and other people she loves. I would hate to think of her last days being spent in pain due to surgery, post code, etc. but, maybe that is just me.
    I've never taken care of a child with CHARGE syndrome, but I have heard of it.
    I know a set of parents who had a child at home that they DNR'd and let pass at home. The child had heart and breathing problems. The child just basically just satted down slowly over the course of the night... then they really started to dip down to unacceptable levels. I believe that when they started having those problems and weren't able to get sats up they DC'd the monitor and held and rocked. From their comments, they seemed like they wouldn't have changed their experience.
    Last edit by jeepgirl on Mar 18, '05
  4. by   nursex20
    I would hate to think of her last days being spent in pain due to surgery, post code, etc. but, maybe that is just me.............

    No, it is definitely me too but the way mom sees it ( right now anyway) is that if she signs even a limited DNR (No CPR, No 911, No Defib.) it would be like she was saying she gave up on her baby.
    We could still keep the vent and G-Button as comfort measures since they are not going to make a difference when the heart goes but Mom is just not ready yet to talk about it.
    As you said, quality is what counts.
    It's funny, before I became a nurse I was afraid of dying. 20 years later my biggest fear is of the different ways I could be kept alive....
  5. by   Aneroo
    I recently has an instructor tell me some of the best nurses are the ones who ask the hard questions. As much as I wouldn't want to talk about, and as much as it would break my heart, I wouldn't want to talk to the mom, but it has to be done. I cannot imagine how hard it would be to watch them code your child because a DNR hasn't been executed yet.
    My heart breaks for this family. Although not a mother yet, I cannot imagine the pain of losing a child who has barely began their life. My prayers go out to the caregivers and family of this child. -Andrea
  6. by   DDRN4me
    nurseX20...i have cared for several children with charge but not at the end. The best advice i can give you is to keep edcuating Mom and her SO about what is happenning at the time...and have her work with the cardiologist to have a "plan". Is there a social worker attached to the cardiology dept at the hospital? what about a chaplain or some one who deals with these kiddos? I do agree that letting her go to God peacefully at home would be my ideal, but some parents never get to that point....my thoughts and prayers are with you all, please keep us posted. Mary
  7. by   shopgal
    So sad, they are in my prayers....
  8. by   SmilingBluEyes
    This is truly sad. Makes me want to count my blessings. (((Hugs))) I can see how emotionally this is taking a toll on you. You are wise to vent.
  9. by   apaisRN
    Quote from nursex20
    It's funny, before I became a nurse I was afraid of dying. 20 years later my biggest fear is of the different ways I could be kept alive....
    Ain't that the truth?

    It's a philosophy that seems common among nurses, especially critical care nurses. The longer I work ICU the more I understand the legalities and ethical challenges that put the MDs in the position of having to extend unliveable lives. You know, I honestly don't think euthanasia of a terminal suffering person is wrong. The problem is that it is such a slippery slope once that kind of thing starts, and pretty soon you're in Nazi Germany. So we're stuck with coding the near-dead, or switching to comfort care at the last possible moment.

    The original poster - I haven't worked peds and I don't know how you do it. It is just heartbreaking. I too hope they do not choose to prolong this little one's life beyond the point where she has some quality.
  10. by   Tweety
    It's awesome that you care. I'll be thinking about mom and baby today and wishing for the best.

    I know you can't turn it off, but isn't it tough to get so emotionally involved in your cases? Are you able to detach without owning too much sadness, so that your life and serenity aren't affected? You don't have to answer, I'm just thinking out loud. Take care.
  11. by   nursex20
    edited
    Last edit by nursex20 on Mar 25, '05

close