[janfrn]

I really hate it when the docs make it sound like we're going to magically return the kids to the parents unchanged by their critical illness or injury. I find I'm constantly contradicting them after they've left the bedside. It's a crime to make these lovely, wounded people think that eveything will be the same as it was before, that little Billy will ride his bike again and laugh at his little sister's antics... when little Billy's brain has been banged around, smooshed and squished, and his muscles have begun to atrophy. Are we even sure he can still see? But oh, Mrs. Jones, we can do this procedure and use that drug and soon Billy will be ready to go home.

Last April we had two horrible situations back to back. The first was a 13 year old who had hanged himself over his inability to get along with his mom's BF. He was only unobserved "for a few minutes" and was given ACLS within minutes of being cut down, but when I took over his care on the Sunday, it was obvious that he had a profoundly damaged brain. No pupil response, no protective reflexes, no response to painful stimulus, no thermoregulation... When we met with the family, this mom said fairly early int he meeting that he wouldn't want to live like that and she didn't want him to either, but our attending talked her into waiting another 48 hours, and the window slammed shut. Now the kid is in a long-term care facility with a trach, gastrostomy and no awareness.

Second kid was ejected from a car at highway speed and was thought to be DOA. But no, he still had a pulse. So he came to us and we flogged him for more than a week. He would have met brain death criteria on the first night if we could have tested cold calorics, but since he had gray matter oozing from his ear, we couldn't. He was maxed out on epi and norepi for most of his stay with us... was on Kayexalate q4H and D25W and insulin to pull his K+ down, it had gone as high as 8.6 without stopping his heart... No one was willing to do an apnea test and the family refused a flow study because they believed the trip to angio would kill him. I nursed this kid for three shifts and almost quit nursing over him.

More recently we had a series of previously healthy infants who presented with vomiting and progressive neuro deterioration progressing to coma and cardiac arrest. No obvious cause. One family insisted that we continue to provide care for the baby even after brain death had been amply proven. We nursed that child until her heart finally stopped a week later. It was brutal.

Some of my coworkers have likened our unit to Dr Frankenstein's lab. Just because we can do something doesn't mean that we should. I wish the docs would recognise that!

[danissa]

[quote=janfrn;2515510]ILast April we had two horrible situations back to back. The first was a 13 year old who had hanged himself over his inability to get along with his mom's BF. He was only unobserved "for a few minutes" and was given ACLS within minutes of being cut down, but when I took over his care on the Sunday, it was obvious that he had a profoundly damaged brain. No pupil response, no protective reflexes, no response to painful stimulus, no thermoregulation... When we met with the family, this mom said fairly early int he meeting that he wouldn't want to live like that and she didn't want him to either, but our attending talked her into waiting another 48 hours, and the window slammed shut. Now the kid is in a long-term care facility with a trach, gastrostomy and no awareness.

jan...that is one of the sadest things I have ever read. Shame on that doctor!

[danissa]

How MANY times do we pass that window? and whats left? An infant who is profoundly disabled, who will grow to be not that wee cute baby, but an unmanageable teen/adult, perhaps weighing more than their parents? Its sad, no Tragic when that wee window is lost, and the kindest thing for the one its happening to is lost.

[janfrn]

Originally Posted by danissa

jan...that is one of the sadest things I have ever read. Shame on that doctor!

You know, if this was the only time I've seen him do something like that, I could perhaps get past it... but he does it over and over and over. The saddest thing? He's our medical director!

[AliRae]

Originally Posted by Okiecruffler

God keep you all, for if this isn't his work, what is?

It's taken me a few says to get past my own tears enough to reply to this thread. One of the last things I did at my job over the past few weeks was deal with one of these devastating situations. Previously healthy 5 week old infant, cardiac arrest at home, over 50 minutes full arrest. It was that "one last round" of epi that got him a pulse back. I was in charge and actually helped my former preceptor admit him once he was "stable" enough to run up to the PICU. Over the next 3 weeks I wondered over and over if things would have gone differently had the 2 of us not been the ones to admit him (we've been referred to as the "dream team" since she's the best we have and the 2 of us tend to work as one together).

It was clear from the beginning that he was profoundly brain damaged. Posturing, fixed pupils, barely any thermoregulation left. But uncle is a medical malpractice lawyer. And despite the fact that these parents were the most realistic, loving, intelligent parents I've ever dealt with, we put baby through 2 weeks of hell before that uncle would stop giving the parents grief about withdrawing support.

I hate that it's so often NOT the immediate family who seems to be making the decisions. In the rare cases when we have parents who get it and agree that their child should not be kept alive like this, there's always the dissenting voice in the family that pushes for one more test or one more day.

I took him to 3 CTs and 2 MRIs and sat with the parents and showed them his brain getting smaller and smaller in the course of just 2 weeks. I sat with them and cried. But I also sat with them and talked about stupid stuff. How they met. The guys currently vying for my heart. How mom can juggle. Why dad doesn't like the yankees.

I guess that's why, at the end of the day, I can keep doing it. Because if I'm not the one to make the little footprint ornament, who will? If I'm not there to speak the truth to a grieving mother, who will? If I'm not there to make sure he gets enough fentanyl and ativan to be comfortable at the end, who will? If I'm not there to go to his funeral and show his parents that this goes so much deeper than just a job, who's going to do it?

(That was long. Obviously working through this one still, eh?)

[Okiecruffler]

Horribly painful, beautifully touching. I've always said, I've met people at their absolute worst, and been surprised by how wonderful they are. Too many times the immediate family is in such shock that the peripheral family comes into play which can be good or horrble.
Now I work at the other end of the spectrum, rehab for mostly CP kids. About 80% of our's are happy kids, even if they aren't great candidates for rehab alot of the time. But then there's that 20% that should not be. I have one pt, 6 y/o profound MR. blind, deaf, responds to stimuli with seizures. Family is just as good as gold, his skin looks great, no contractures, but also no awareness and I have to be at the bedside with ativan for diaper changes. Wonder why I miss a good trauma every now and then?

[janfrn]

Originally Posted by AliRae

I hate that it's so often NOT the immediate family who seems to be making the decisions. In the rare cases when we have parents who get it and agree that their child should not be kept alive like this, there's always the dissenting voice in the family that pushes for one more test or one more day.

Oh yeah... Gotta love that. My boy from the MVC had a cousin who is an EMT. Where do you think the push for full code status came from?

Originally Posted by AliRae

I sat with them and cried. But I also sat with them and talked about stupid stuff. How they met. The guys currently vying for my heart. How mom can juggle. Why dad doesn't like the yankees.

I do the same things. We're so alike, you and me. Except that I'm old enough to be your mom...

Originally Posted by AliRae

I guess that's why, at the end of the day, I can keep doing it. Because if I'm not the one to make the little footprint ornament, who will? If I'm not there to speak the truth to a grieving mother, who will? If I'm not there to make sure he gets enough fentanyl and ativan to be comfortable at the end, who will? If I'm not there to go to his funeral and show his parents that this goes so much deeper than just a job, who's going to do it?

I think that's why most of us are still in there swinging. These connections we make with families are what makes us the kind of caregivers we would want for our own family members. We all go the extra mile.

Originally Posted by AliRae

(That was long. Obviously working through this one still, eh?)

(Slipping a little Canuck in there are you?) Hang in there; you'll find the silver lining in this one just like you have for all the others. {{{{{Ali**********

[canadian_girl75]

I am new to PICU and haven't experienced the death of an infant or child yet. Many adults in the past which are still hard but never a child. I fear the day I will have to face a parent who's child has just passed and there is nothing I can do to relive thier sorrow. I keep telling me myself that we save so many more lives than we loose. But still even thinking about brings tears to my eyes. Our unit is a Cardiac PICU and somedays I feel so sad taking care of these babies becuase even though they are alive you know they will never live a normal life and some may not even make it past puberty.

I was particularly touched by one persons post who spoke of holding the infant as they died. This is a common practice on unit. In fact no child or infant dies alone in a bed if we can help it. They are all held whether it be by the parents or the nurse. They aren't wrapped in plastic either. At least by us anyway. Infact they are wrapped in several warm blankets and babies are carried to the morgue in a nurses arms. I was quite impressed by this practice. I hated wrapping adults in plastic and taping the legs and the neck. I would cringe everytime. But still I know that the first one I loose will be hard. And I know now that I am allowed to cry and feel sad. Its part of being human, and part of being connected. Even nurses who have been around the PICU for 20+ years say they still shed a tear when loose a child.

[janfrn]

Believe it or not, sometimes the best thing we can do for a family that is grieving is simply to be there. Not necessarily in the room, but close at hand where they can see us and know that if they wish we're available for whatever they'd like us to do. Touch is also very powerful. A gentle hand on their shoulder is good, and you'll know if they don't want to be touched because they'll stiffen or pull away. Most of the time though, they actually relax and lean into you.

A couple of years ago, one of my coworkers had a stepchild who was dying in our unit. I was not close to this coworker, just workplace-friendly. But on that night, in that dimly lit room, our relationship changed. He and the child's mother were no longer together but that didn't change his connection to the child, or the depth of his grief. The room was packed with the mother's family and friends, all there to prop her up. No one was paying any heed to him, sitting at the edge of the room. Not sure how it would be received, I nonetheless put an arm around his shoulders. He glanced at me then relaxed and leaned on me for nearly an hour. We never spoke about it and probably won't, but since that night he seeks me out at times when he needs to talk. I welcome that.

The night I held little D as he died (December 11, 2003) I could not bring myself to put him in a body bag. I did as canadian_girl75 says, I wrapped him in a soft green blanket and carried him in my arms to the morgue. The security guard was new and wasn't sure we should be doing that, but I told him that was the only way this baby was going, so he needed to decide if he was going with us or if he wanted someone else to do it. He went with us. Good choice.

[WarEagle4Life]

I have read and re-read this thread and each time, I cry.

We've had this conversation in our unit many times. Our MDs are pretty good about not "dangling the carrot". Sometimes, though, it is a gradual process with some families, they need time to accept the inevitable. I think over the last couple of years, we have all begun to accept (in our unit) that maybe, just maybe, death is not the ultimate villan, that there are things worse that dying.

Generally, when we know a family has made the decison to withdraw life sustaining measures, the child is a one RN assignment. Often, an RN who has taken care of the child a lot will come in just for that child. I did this for two families so far. Neither of these 2 beautiful boys went to the morgue. Our ortho techs help us transport and they have been wonderful in accomodating (breaking the rules) for this. We made sure that Beautiful looked only like a child being transported for a procedure. Yes, there was a body bag, but not touching him. He was wrapped in warm blankets and his favorite blanket "Blue". The other RNs who were off and had worked with the family during hospitalization came in - we all flanked the stretcher so no one could really see him. Our NM went ahead and cleared the hallways and got the elevator and held it. The funeral director was with us. Daddy gently placed his son on the backseat of the director's car. The director covered Beautiful with his own coat. Mom & dad covered Beautiful's face with Blue when they were ready. It was cold out, but we really didn't notice too much. We did what we could. None of the so-called "conventions" was observed. We had all been freely crying, had blotchy faces and runny noses, so were kind of hard to miss.

We just lost one of our frequent flyers, an MD kid, 15 years old. He could be sweet and funny then be the most obscene thing you've ever seen. We witnessed his deterioration over three months. I never thought I'd miss a profane/obscene mouth so much! He knew more about his cares (trach, suctioning, gtube, bowel regimen) than most adults. The day he died was such a dismal day in our unit. There was no laughter, no jokes. Many, many tears for a red-headed demon who would never terrorize our hallways again.

I hurt. When I quit hurting, I'll quit PICU. I'm learning to cope and to grieve the losses, but try to think more on the many, many children for whom we've made a great difference.