Preventing pediatric disability - page 3

by Texan56 2,708 Views | 24 Comments

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 them about the things that cause... Read More


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    too many "interestings", I see. .must be getting sleepy - sorry.
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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.
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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.
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    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.
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    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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