Preventing pediatric disability - page 2

Now that I am involved with pediatric private duty nurisng, I am seeing children suffering needlessly. :yawn: How (in what types of nurse positions) can nurses get to young people and educate... Read More

  1. Visit  tralalaRN} profile page
    0
    Yep - you're right. Preemie mom. Vendetta - not so much. Big interest in neonatal ethics after seeing many families affected. Sat on a few national parent/professional boards. Spoken at conferences on neonatal issues. Quite a bit of advocacy. No never worked in neonatal, was asked, refused. Don't think I could live with it after experiencing it first hand. My spot in nursing is neonatal "mop up" - working with the kiddos and families who are in it for the long haul.
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  3. Visit  JaredRN} profile page
    1
    Hahahaha... I love how my assinine comment created the best discussion on neonatal ethics I have seen yet. All I did was bleep a cussword at an ex president, and the context just spewed out. I'm really fortunate to be part of a community of such smart nurses and also laughing my ass off.
    tralalaRN likes this.
  4. Visit  tralalaRN} profile page
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    LOL - you're welcome! Glad you started it! T
  5. Visit  nursel56} profile page
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    Quote from JaredRN
    Hahahaha... I love how my assinine comment created the best discussion on neonatal ethics I have seen yet. All I did was bleep a cussword at an ex president, and the context just spewed out. I'm really fortunate to be part of a community of such smart nurses and also laughing my ass off.
    Oh dearie me - and you're a new member (or new poster) as well! Glad I didn't scare you away.

    Tralala.- as a result of working at Children's Hospital and taking care of many children who had medical issues, and for whom we were their only family, the issue is extremely emotional for me as well. I might even say that some of the stuff I saw happen continue to haunt me terribly to this day.

    If I ever write a Nurse's Article I have a semi-working title called "The Crib In the Corner". Many babies inhabited the crib in the corner. Many were just a bit too sick to send to long-term rehab centers and had no family either willing or capable enough to care for them at home. When they died, it tore me up inside. I know we aren't supposed to "get emotionally involved" but there were just some that you couldn't help it .

    It isn't exactly the same thing as resuscitating babies over and over - I guess I just happened to be more familiar with parents who push the medical community to futile interventions when the babies quality of life will be so compromised - well you know what I am talking about.

    It irritates the **** out of me that we effectively are told to "shut up" when we want to talk about the ethics of prolonging life at either end of the cycle of life with hysterical cries of "death panels!!". Nobody wants to push back at that type of idiocy.
    JaredRN and tralalaRN like this.
  6. Visit  tralalaRN} profile page
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    I agree with you entirely.

    One of the presentations I gave a few years ago - wish I still had the powerpoint presentation, as it was pretty awesome. .it was right when that 21ish weeker was being "saved" in FL, I believe. . Anyway, it was to a group of nurses, and one of them said "well, it's the PARENTS who want us to do everything!" I said - "why do you suppose that is?" She couldn't really answer. I asked her if it might be because parents ONLY see the miracle baby stories. These stories are very impactful. Neonatal units/hospital PR depts are famous for pumping those out - especially around Mother's Day, Christmas. .it's the only side most people ever really see. Then it's the March of Dimes - miracle poster kids who are pretty much all former preemies, then it's The Children's Miracle Network Telethon. If they saw what I saw, parents would not be asking that everything be done. In fact, they'd run for the hills and deliver in some cabin in the woods or their bathroom floor. They would be so terrified.

    A few years ago, one of the families I got to know had 2 surviving triplets. Both of the girls had some issues, but it wasn't really too apparent at first. They were asked to be involved in the Children's Miracle Network Telethon. . .until both of the girls needed walkers, braces and thick glasses. All of a sudden - cancelled. So. .here again, it's a very carefully crafted white-washed version of prematurity that is being presented to the public. So when the public goes into preterm labor. .of course they will probably want everything done.

    Good discussion. Glad you stayed and poked me with that sharp stick of yours Best - T
    TeenyTinyBabyRN likes this.
  7. Visit  JaredRN} profile page
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    [quote=nursel56;5118837]Oh dearie me - and you're a new member (or new poster) as well! Glad I didn't scare you away.

    Well I'll have you know I'm also a Ped's ICU nurse, local hospital too, not too far from Children's LA. I do have a lot of respect for those CHLA nurses, they really have some of the best stories, even the sad ones. It's part of why I feel Peds nurses to me are special. I haven't been doing this very long, but it doesnt take very long to become disturbed with the realities of working with vulernable children, and not understanding why sometimes. Those MRCP'ers, they have some of the loveliest familes, and some awful ones too, and you know what I'm talking about. But it's not something that can be put on a poster or a TV commercial. The general public will never understand it. Unless you are someone personally touched by premature child that grows up disabled you never know what some people go through, or what even the medical staff or nurses go through. It's just not plain talked about in any smart kind of way, and I'm glad, feelings aside you're able to not only embrace the emotional highs and lows, but realizing hey we're all nurses here and we all know what we're talking about. How we think, how we see human life, isn't much different from eachother, we're special cause we see this side of life that not many people get to witness.

    My comment about Regan, was more fustration and sarcasm than anything, it wasn't meant to be thoughful. It was a little angry because I don't want to see premature babies live and die only to suffer in this world for a short time. You can't blame Regan anymore you can blame Bush for 9/11. I'm glad the conversation got elevated a little more anyway, not everyone thinks like we do.
    tralalaRN likes this.
  8. Visit  tralalaRN} profile page
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    Here here. . .

    I've got a little personal library of articles that I've been gathering for some time now . .although this one is a tad dated, I thought it was very interesting. Again, something no one really talks about. . it's interesting and since you are both in the hospital trenches, 'thought you'd find it interesting as well.

    http://www.sfgate.com/cgi-bin/articl.../NEWS12097.dtl
  9. Visit  tralalaRN} profile page
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    too many "interestings", I see. .must be getting sleepy - sorry.
  10. Visit  nursel56} profile page
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    Jared - peds nurses are special. It's just something I feel in my bones - this is not to say better/worse/anything about other specialties but there is an element there (which includes the medical staff as well) that takes things to another place. If there is someone not really temperamentally suited to peds it stands out like a neon light and they just don't last very long.

    My reason for getting into it originally was a family thing like Tralala - my 4 yr old brother was diagnosed with ALL (He is 41 now) and my family got extremely involved with the hospital and the Ronald McDonald House. My stepdad was a Rotary speaker, spending many hours in conference rooms and luncheons in support of CHLA and RMH, long after my bro was in remission.

    The oncology liaison nurse at the time was so awesome - and really continues to be my ultimate role model. My mom became friends with one of the heme-onc docs there who was later killed in a stupid traffic accident. We were just devastated by it.

    Quote from tralalaRN
    . . .One of the presentations I gave a few years ago - wish I still had the powerpoint presentation, as it was pretty awesome. .it was right when that 21ish weeker was being "saved" in FL, I believe. . Anyway, it was to a group of nurses, and one of them said "well, it's the PARENTS who want us to do everything!" I said - "why do you suppose that is?" She couldn't really answer. I asked her if it might be because parents ONLY see the miracle baby stories. These stories are very impactful. Neonatal units/hospital PR depts are famous for pumping those out - especially around Mother's Day, Christmas. .it's the only side most people ever really see.
    Yeah. I've had the nagging feeling for a while that the burgeoning area of private duty home health (what I've been doing for 6 years) is because so many of these kids ares saved - by and large it's better to keep them with family, but the relentless stresses of taking care of a child who will never get "better" to the point of functionality has got to be unbearable at times. So when people complain about parents I try to get them to imagine what that must be like to deal with day in and day out year in and year out

    The sfgate article reminds me that the fertility specialists who only show that couple with the one happy healthy baby completely gloss over what it's like to either do selective termination or try to deliver an insane number of children. For every Jon and Kate plus 8 there are many more heartbreakers..

    Oops I am rambling here! It's good to talk to people who know where I'm coming from.
    TeenyTinyBabyRN and tralalaRN like this.
  11. Visit  tralalaRN} profile page
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    Holy cow - I'm doing PDN also. I'm actually at my job right now - little guy, trach and seizures, having a quiet night tonight, so far. .and yes - I would have to agree this area of is pretty much exploding, thanks to neonatal.

    And yes, the fertility drugs. .insanity, quads to octuplets - this is not a miracle. The family in MN a few years ago that had sextuplets at 22 weeks - only one survived. They don't make reality shows for a lone survivor of a large multiple birth now do they? Again - media impacting the parents. .Have you noticed how so many hollywood people are having twins? Gotta be a fertility thing going on there too. It's not crack cocaine that's the problems as much as it is pergonal. How come the March of Dimes doesn't jump on reining in fertility clinics?

    As the article said just because we can, doesn't mean we should. I've always said that I wished neonatologists could be made to spend a week (month would be better) with a family severely impacted by prematurity. .I think things might finally change then. That and reversal of Baby Doe.

    I think the Dutch have it right. Babies below 24 weeks, comfort care. Babies with large IVHs, comfort care.

    Night all.
  12. Visit  nursel56} profile page
    2
    Quote from tralalaRN
    I think the Dutch have it right. Babies below 24 weeks, comfort care. Babies with large IVHs, comfort care.

    Night all.
    It's not my night time . . . one of the saddest cases I'm familiar with only because the mom keeps a blog ... her child had was literally dragged back from the brink of death after being down for over 15 minutes from what the mother chroniciled (the details being confused in the telling by the mom) but the drama was intense with the docs all telling the mom point blank that they felt it would be unethical to resuscitate again after so severe an insult to her brain - hysterical mother convinced them to proceed - and now they have a 4 year old child in the grip of continuous, horrendous seizure activity - and basically to stop them at all she has to be zonked to the point she can't interact with her environment at all. If I think too much about what the little thing is experiencing subjectively when she begins the high-pitched shrieking - I just can't go there.

    They are one of those families who never leave the denial. Interpreting random behaviors as signs of progress - maybe kind of a guilt thing? We had a near-drowning case - an 18 month old girl who never improved during her very long hospitalization - sent home after parent teaching. I happened to be w/ them as they packed all their supplies and the dad told me "next time you see J----- she will be walking, I can promise you that." You have to wonder how candid her doc must have been about her prognosis if they believed that. There are docs who buy into the denial. All that does is give them the belief that the other 5 specialists were not truthful.
    TeenyTinyBabyRN and tralalaRN like this.
  13. Visit  tralalaRN} profile page
    1
    Oh boy - this is a tough case! Emotionally challenging for sure.

    I had a similar case awhile ago - baby born with multiple anomalies, vent dependent, pretty much paralyzed, joint displacements. Parents were talked to by several people in clinic about terminating support, but they couldn't do it. (Life support should have been terminated in the NICU.) All of us nurses thought that she'd eventually get some raging infection that would take her, but she's still going at over a couple of years old right now. They too, celebrate things like being off the vent for an hour. .ok - that's great and all, but my though is, would YOU want to live like this? I sure wouldn't. Then there is the cost - the COST - 24/7 in-home RN care pretty much, zillions of clinic appointments, and then - the thing that made me really distance myself - mom wanted baby to have a surgery - to lengthen heel cords - really? She cannot move except for some really minor kicks - doesn't roll even at over 2 years old and you want to put her through this surgery? What kind of MD even suggests this for a child in this condition? It is just really something to see how medical "care" operates sometimes. I know parents often are looked as being in denial (and often are), but boy, oh boy, sometimes I shake my head at medical people who push for some of these things when it's going to make absolutely no difference in this child's level of functioning.

    But, I think the way neonatal is practiced in this country is the area of medicine in greatest denial of all. They really celebrate their success, and don't show the other side.

    Best to you -
    TeenyTinyBabyRN likes this.


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