Published Jun 1, 2002
I couldn't decide weither to put this under OB or NICU...
Most everybody likely knows what I do, but just in case...I am Clinical Coordinator for an agency that does PDN on high tech kids...I have been working with these kids for several years and was promoted into my position over a year ago.
It is not my job to make ethical or moral judgements about these kids, their parents or the care and medical decisions that are or were made for these kids. It is my job to help them be happy and healthy, to grow and develope to the best of their potential and to enjoy quality in whatever quantity of life God blesses them with.
I am in the process of hiring staff so that we can bring a new case home.
She is a 25 week abruption, 27 yo Mom G3 now P3 , born via C-sec, Mom under general, no family/Dad in delivery. Baby weighed 1020 grams. They worked on her for 20 minutes before they got a heart beat. pH was 6.45. She is now 3 mo old and ready to come home...trach, vent, GT, grade 4 retnopathy both eyes, anoxic encephalopathy, intercranial bleed, seizures.
For the first time I find myself asking WHY?
Can't tell you how many times I have shaken my head with total incomprehension of the same: WHY do these things happen??? There is no easy answer; there really is NO answer. Some people just ask for it, flaunting safety of themselves and others for their freedoms; others, well, things just happen. Seems that those who don't "deserve" bad "luck" have more than their share of it. It is just not a fair world. We could break it down into a challenging ethical discussion which will never get "solved" and will not help this little one a bit, but may help future premies born in similar circumstances. I do agree with what you said: it is your (our) job to help them (patients) be as healthy and happy as they can, and to grow and develop to the best of their potential.
It IS hard to separate ones emotions from some of the cases that REALLY touch (or anger) us personally, for whatever reason. I sense that's what you're feeling here. Perhaps a little light will glimmer on the "why" as you care for this baby. Peace and courage to you. --- Diana
Many time in this profession we ask ourselves "why".
But it isn't our job to ask that question or make that decision.
It is our job to use our skills to provide the care needed to make lives as prosperous and comfortable as possible.
Yes we have all had cases that we questioned. We just have to do the job of caring. I think thats the reality of it all.
I don't think that you are asking "why?" with regards to this baby's care. I think yio are saying why were they so aggressive with her in the first place? And I agree with you.
But I don't know much about premies although I do know that babies who would have died not that long ago are not only living but thriving-and at younger and younger gestational ages. Who's to say which ones will make it with good quality of life and which won't? But 25 weeks is really pushing it.
Of course the other thing that strikes me is that a week earlier and that child everyone struggled so hard to save could have been legally aborted, and left to die if born alive. Now THAT makes you think!
hoolahan, ASN, RN
kids, don't know how long you have been a nurse, or what your spiritual beliefs are, but I struggled with this question about 10 years ago, when I lost a child very dear to my heart, a pt not my own, but she felt like part of my heart.
I went to my minister to talk about it. We prayed together, the night before she went back for the surgery I knew she would not live through. His words gave me enormous comfort, just by assuring me God does not want children to suffer. We prayed for the wisdom of all the nurses and cos caring for her to do the right thing. She did die about 2 hrs post-op, after along and horrendous code (no one wanted to give up.)
A few months later, he gave me a wonderful book to read,
(info taken from http://www.amazon.com )
Window to Heaven, When Children See Life in Death
by Diane Komp
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This book was written by a pediatric oncologist, and she descibes fascinating stories of childrens pre-death visions. I highly recommend you read this, it gave me a sense of peace and great comfort to read it, and I hope it does for you too. I gave my copy away to another parent whose child was dying in our unit.
Also, interesting, and along the saem lines is Bette Eadie's book "Embraced by the Light" A most comprehensive near-death experience. The woman was criticized b/c no documentation existed of her clinical death, but the story she has to tell, even if it is a fantasy or a hallucination, is one I choose to indulge in.
These two books sparked my interest in near-death experiences, and I write a phenomenol paper on it, sadly in the days before I learned to back-up my work, and so I did a lot of research on the subject, and one thing I can say is, if she is hallucinating, an awful lot of people are having identical hallucinations. Anyway, one of the most fascinating things she had to say was, when she was in the presence of God, it was revealed to her that souls choose their path in life. They even choose if they will be an aborted fetus or a crippled child. It is because they wanted that experience. This totally blew me away. It is explained much deeper in the book, but I think you would enjoy reading it, and get some comfort from it if you are open-minded.
While I found these books a great comfort, I did find that I just couldn't do peds anymore.
Why? Because her mother loved her enough to bring her into this world, and take her home, and not abandon her in the hospital, like some moms do when they find out their child is not going to be "normal." This child must have some greater purpose than you and I can possible begin to know. I have to put my faith in God, that He knows what He's doing. How else can it be explained?
I feel for you, please order those books, esp A Window to Heaven. Let me know what you thought.
Originally posted by RNPD I don't think that you are asking "why?" with regards to this baby's care. I think yio are saying why were they so aggressive with her in the first place?...
I don't think that you are asking "why?" with regards to this baby's care. I think yio are saying why were they so aggressive with her in the first place?...
BINGO (sorry I wasn't very clear in my original post).
I have several kids on case load similar to this baby, I guess if they weren't being so agressive I would be out of a job.
The effort put into resusitating her would make more sense to me if there had been a family member present and aware.
I went to the case conference today and got to see her. She is fully vent dependant and only withdraws to pain (by report), no eye opening, no sucking, she is totally flaccid.
I have never felt so outraged at the 'miracles' of modern medicine as I do right now.
Yes . . . . . 20 years ago as a new grad floating to NICU occ, I happened to mention to a friend who was a seasoned OR nurse (about to retire). I was blown away by her impassioned tirade against expending time/energy "saving" premies younger and younger, who would be so disabled -- and especially, as you have pointed out, when there was no family member to consult with re: efforts. I don't work OB - are the parents indicating Advanced Directive for both mom and baby, antepartum? ?? It is too big a question for me . . .
Originally posted by RNPD I don't think that you are asking "why?" with regards to this baby's care. I think yio are saying why were they so aggressive with her in the first place? And I agree with you.
I, too, thought this was what you meant. I don't have an answer for you, but I can share that I have felt the same way before.
Sometimes, I think, that technology bites us in the a** as much as it helps us.
Hugs to you for doing such a hard job.
Yes, sometimes our aggressive efforts do create "frankensteins", the living dead. But do we know the outcome before we start? NO we really don't. I've seen some mighty unusual recoveries and my share of "saves" like you describe above. from both neonates to adults. But where would we be today if we didn't try all those years ago. There are many productive and useful years of life that wouldn't have been lived if we hadn't tried.
My take on your WHY? was we now know the level of function and life with this child, how aggressive will we continue to be? If the baby arrest again do we cpr with a full court press? I'm not advocating withdrawal of treatment but where do you go from here.?
This literally brought tears to my eyes. I don't have an answer, but just know that You, Kids, are in my thoughts and prayers.
because we can.
if a patient is a full code and they arrest dont we do what we can to save them regardless of their outcome?
we just automatically do it. most times we dont question it.
and sometimes its not for the best and sometimes its abused but i think maybe its not for us to say who gets treatment and who doesnt.
oh i have struggled with this time and time again with the elderly. i see so many who are already dead but their bodies stubbornly live on. no quality of life ...at least that we can tell...at all. but for whatever reason, family, docs...they have full code status. and they arrest and we bring them back....for what?
i try not to ask myself that question because it angers me.
we had a 90 year old DNR pt a few months ago who was sedated with morphine for a procedure. for whatever reason, the drug over sedated her and she was dying...her respers were slow and shallow...her bp dropped down to palp.
this presented a dilema to the nurse....does DNR apply here?
one shot of narcan would bring her right back...is that considered resuscitation?
the nurse decided that narcan would not be considered a resuscitation procedure and administered it.
this white haired emaciated bit of a woman's eyes shot open and first thing out of her mouth was:
YOU STUPID PHUCKING BYTCH! I WAS GONE...I WAS GONE...WHAT THE HELL DID YOU DO? I WAS GONE I WAS ALREADY GONE I WAS GONE
i didnt laugh then but it was kind of funny listening to her scream at the nurse as she was being taken to ICU
YOU BROUGHT ME BACK YOU BYTCH....WHY WHY WHY....I WAS GONE ...YOU STUPID PHUCKING BYTCH...I WAS GONE .....all the way down the hall and all the way into the elevator and you could still hear her partially down the shaft.
Why do we do it...yes I agree with the answer...'because we can'.
I don't always like it and it doesn't always feel right to try as hard as we can, knowing we may well create a veggie with vital signs..
But if we don't, someone will always be there to sue us for 'not doing absolutely everything'.....what is the statute of limitations for childbirth injury negligence/malpractice lawsuits now? 18 years or something?
I can't do PICU/NICU either. Breaks my heart. God bless those of you who can. It's a tough job.
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