Let's talk about death

Okiecruffler · Jan 29, 2008

Reminds me of my very first patient in the PICU. Here I come to meet my preceptor, me a big bad ass nurse fresh from adult CCU. I find her sitting at the bedside of a beautiful 8 y/o boy. So I ask, "so what's the plan today?" She tells me we're waiting for the phenobarb level to drop so we can declare brain death. I learned alot about myself in the next 12 hours, some stuff I didn't want to know. Still not sure how I managed to go back in the next day.

vamedic4, EMT-P · Jan 30, 2008

One of my favorite long time patients died on 1/12/08, a 17 year old HLHS who needed a heart but because his body was failing him...he wasn't a candidate. I've known him and cared for him for 10+ years...and I will miss him. I'll miss his laughter when he'd come up to play a joke on our charge nurse (or, more often, on me), I'll miss seeing his mother and his little brother..as they always stayed for a few hours at night with him before going home to get some rest before school.

I'll miss that little boy I knew, but he was growing into a fine young man...even as sick as he was.

Early on, this young man didn't want to take his meds...and all it took was the threat of an NG tube (which he detested) to get him straight. He didn't like the float nurse (said she was mean) so one day he told her she "better watch out". He was a teen who wanted familiarity...someone he "knew" taking care of him. For a long time after that he was 1:1. Someone had to be sitting with him all the time - we all got to know him very well.

He was going to be transferred to the floor so that he could pass among those he knew best, but his body gave out in ICU just before he was to come up. I hope he is at peace, and I'm thankful for the opportunity to be a part of his hospital family. Thankful most of all for the opportunity to make a difference in his life.

vamedic4

AliRae · Jan 30, 2008

I've just been reading over this thread again, especially when Jan said she held a baby who's mum just couldn't be there.

I've never been in a situation where the parents didn't feel like they could be present, but when my cousin was removed from support (he drowned almost 10 years ago), my aunt and uncle couldn't be there. I just found this out and was, I think, unreasonably angry with them. I felt like they were selfish to not be with him. I guess reading back over some of these posts, it's not the strangest thing ever, and they're not the only parents to ever feel that way? I just hate to think that he was alone.

Pediatric Critical Care Columnist · Jan 30, 2008

One of my favorite long time patients died on 1/12/08, a 17 year old HLHS who needed a heart but because his body was failing him...he wasn't a candidate. I've known him and cared for him for 10+ years...and I will miss him. I'll miss his laughter when he'd come up to play a joke on our charge nurse (or, more often, on me), I'll miss seeing his mother and his little brother..as they always stayed for a few hours at night with him before going home to get some rest before school.
I'll miss that little boy I knew, but he was growing into a fine young man...even as sick as he was.
I hope he is at peace, and I'm thankful for the opportunity to be a part of his hospital family. Thankful most of all for the opportunity to make a difference in his life.
vamedic4

My condolences, vamedic4. People forget that we too grieve for the patients we've become close to, out here in the second circle of grievors. Our relationships with patients and families can be complex and often enough not this close, but nevertheless, we still feel their loss. The day we stop feeling it, that's the day we should look for different work. Thank you for sharing.

I've just been reading over this thread again, especially when Jan said she held a baby who's mum just couldn't be there.
...when my cousin was removed from support (he drowned almost 10 years ago), my aunt and uncle couldn't be there. I just found this out and was, I think, unreasonably angry with them. I felt like they were selfish to not be with him. I guess reading back over some of these posts, it's not the strangest thing ever, and they're not the only parents to ever feel that way? I just hate to think that he was alone.

But Ali, was he truly alone? He had someone like you (or me, or vamedic4, or CindyMac58) with him when he passed... not family, but someone who cared. Our previous experience with situations determines what we do in the next; perhaps your aunt and uncle had something in their past that made them unable to be in the room, something you don't know about. Maybe you should talk to them; you might be surprised.

oncnursemsn · Jan 30, 2008

What a poignant, beautiful thread, glad I found it. I work with adults in a bone marrow transplant unit, and hope it's ok to comment on my adults. (Left the pedi BMT unit 6 years ago, miss those kiddies!)

We have our former director back- the one that dangles the carrot in even the most dire and futile cases- "I've got something else up my sleeve."

Yeah buddy, your ***(# arm!

It just breaks my heart when our docs aren't honest with patients and families, and what I notice is that the families often don't question what is really going on here. They don't want to hear that treatment has failed. Reading through this thread, we (nursing) really need to get out and educate people that what you see on ER or Grey's Anatomy is fiction. Coding and cracking open chests rarely has a good outcome. That just because we *can* jump on your chest, the end result may be worse than the alternative.

That being said, I have 2 gentlemen who we transplanted late summer, and their cancers have recurred aggressively. They are ready to fight their disease, but sadly realistic that this is a devastating recurrence. Gave both of the salvage chemo over the weekend, knowing that we're just postponing the inevitable. Warm, rich, brave fighters. Never complain, grateful for all we're doing for them. It hurts to know they're going to leave loving wives, adult children- and me. I'm selfish- reminds me that funerals are for the living. Sorry this is so long, I agree with other posters: when I stop caring, it's time to get off the BMT bus. :heartbeat

oncnursemsn · Jan 30, 2008

AcK, forgive me, didn't see the PICU, just the "Lets talk about death." My apologies!

Pediatric Critical Care Columnist · Jan 30, 2008

AcK, forgive me, didn't see the PICU, just the "Lets talk about death." My apologies!

Not a problem at all. It's a universal enemy that we're talking about here, and all comments are welcome.

AlabamaBelle · Feb 2, 2008

Hi all :bluecry1:

Today is the 1st anniversary of Beautiful's death. I just read the most incredible post on his Caring Bridge site from his mom with a poem she'd written about all the things she misses - the silly, incidental everyday things we all take for granted. I will always grieve his loss. He's the first child I had taken care of alot and participated in the withdrawal of extraordinary means. The morning he left us, I will always remember the anguish, the love and the courage his family displayed as they realized keeping him with us was only delaying what was happening. They were able to plan and have things the way they wanted and needed. One of our intensivists came in just to be with the family.

Beautiful's family is very active in CureSearch. He's on several billboards in our area alone. The caption reads: "Cancer is the number one killer of beautiful children." My husband saw the billboard and has seen pictures on his site. He was looking through a mail order catalog (his favorite thing to do besides ordering) and saw a painting of an angel, entitled "Beautiful". He was dumbstruck - it looked just like "my" Beautiful.

We have 2 kiddos on the PICU side whose families aren't willing to see/admit the inevitable. One has coded countless times, is on ECMO (gone through countless circuits, oxygenators, pump changes, pressors, chest tubes upon chest tubes - very little lung tissue that's viable remains) and the other is a heme/onc with sepsis progressing to MODS. On the cardiac side, 2 others keep trying for heaven and we won't let them go.

This is one awesome thread - thanks for letting me grieve. Apologies for typos, crying again.

allnurses Guide · Feb 21, 2008

My name is Sheri and I just wanted to comment here...my son Joseph had relapsed AML. He had a stem cell transplant with unrelated umbilical cord blood...obviously AML is a demon and we were worried but cautiously hopeful. To make a long story short, sadly, Joseph contracted CMV pneumonitis. There was no sign of cancer in his body. All his other organs were functioning appropriately. He started to fail and was placed on a ventilator...attempts to extubate were unsuccessful..he always returned to crisis. Because all his other organs were holding up, we continued to hope. For four long, agonizing weeks he was on a vent, then an oscillator and finally on January 09, 2007 one of his team got the courage to gently mention the possibility of DNR to us. We made the decision to discontinue treatment on January 10th and Joseph passed away within 5 minutes of his being removed from the vent.

The nurses in the PICU were the finest caliber of people I have ever met in my life. Particularly I became close to Amy and Traci, who were friends from nursing school and worked together there. They took incredible care of Joseph and yet were so good about letting me do the things for him I was still capable of doing, letting me help change him and clean him, etc. I love those girls with all my heart. Traci was with us when Joseph died. She saved her tears until she thought we were gone, but I was a mess and wandering aimlessly and I came across her sobbing much later, down the hall. It touched my heart so much that she let us in like that.

I am now a pre-nursing student. I was inspired by Amy and Traci, and by my wonderful son, who died at the age of 13. I will forever be thankful for those who tried to hard to help him get well...and to those who helped hold me up when he couldn't. I am working so hard to join your ranks. I appreciate what you do every day of my life, even though we lost. http://www.caringbridge.org/visit/josephmorrison

Pediatric Critical Care Columnist · Feb 21, 2008

Welcome to allnurses Sheri and thank you so much for sharing a tiny piece of Joseph with us. He had a special light in his eyes to go with his beautiful smile, didn't he? You must miss him terribly. How generous of you to want to give back. I came to nursing by a similar path (my son survived, but with multiple disabilities) and followed my heart to PICU. It's a humbling place, sometimes an unforgiving place, but it's the only place I want to be. When you get here, we'll be waiting with open arms!

Almost from the beginning of our education we have it drilled into us that we can't allow ourselves to become enmeshed with the people we care for. What an oxymoron that is! We're told we must maintain a professional distance and that we cannot allow our emotions to be touched by what we do. We're told it's unprofessional to cry with a patient or their family when things don't go the way we want them to. I say FORGET THAT! If we squash down our humanity and harden our hearts we lose the kernel of why we became nurses in the first place, and we lose the opportunity to truly know ourselves. When you saw Traci crying, I really hope she wasn't embarrassed. Seeing her grief could only validate and support yours. Joseph was loved. I cried before I left work this morning in front of a grandmother, not because the child is dying, but because he's being transferred to the ward after 4 months and 6 days in our unit and countless brushes with death. He will soon be back home, hopefully only ever a visitor from now on. These experiences are what makes the other ones bearable.

danissa, LPN, LVN · Feb 22, 2008

Welcome here Sheri. I read your site, your loss is overwhelming honey. Your boy was such a brave wee guy, and such shining eyes and a beautiful smile..would have grown into a handsome guy who would have had many women casting a smile or two at him, I'll bet! Our family lost a young man, three years ago, wasn't even my son, but would have been my son in law, and we loved him so. Hardly a day goes by, that I dont think of him, I still feel that loss, so yours must be a billion times more. I'm so sorry that your wee man had to go. Hope your family are getting by ok, hugs to you and your boys.

elizabells, BSN, RN · Feb 22, 2008

Is anyone else having a bad run of losses at work? I swear, we've lost at least one kid almost every day for over a week. That's REALLY unusual for us. I lost another primary yesterday, although not on my shift. A beautiful, perfect girl who happened to be born with primary surfactant deficiency. I know these things go in cycles, but this is getting weird.