Saturday, February 03, 2007

When you watch a child die

People take a surprisingly long time to die. I have seen frail, elderly persons on morphine drips go for days, every breath sounding like their last. When we do a DCD, we never really know how long it’s going to take for that person to cardiac arrest (aka die). We might have a good idea, an educated guess, but no one, except maybe God, knows for sure. I’m up front with the family about this. If the patient doesn’t die within 60 minutes, they can’t be an organ donor. We don’t bring up donation until after the family has decided to withdraw care. Then they’re placed on comfort care, an IV drip, usually a narcotic and a benzo, like morphine and ativan, so they won’t suffer as they die. The DCD donors that I’ve had didn’t have much neurologic function at all and I don’t know how much they really feel, but just having an intact brainstem will make your breathing ragged and gasping and it’s very difficult to watch if they’re not sedated.

It’s weird to get up in the middle of the night to go to work. Triage called me at 1900 yesterday to give me a heads up. Another TC and her orientee were doing a DCD donor and our policy states that two TC’s need to be present for a DCD, or a TC and a hospital services manager. Orientees don’t count, although this one has a good head on her and a lot of nursing experience. Even so, would I go and help them for the OR? The logistics of a DCD are a little complicated, one person usually does the ICU/family support part and one person gets the OR ready and has the teams standing by to start the recovery after the patient arrests (dies).

I tried to nap but I was too wound up. I called triage back to get the info on the patient. I already knew it was a PICU patient, but I found out it was a 5 year old. I reminded myself that I was only doing the OR. I did four DCD’s last year, the youngest was 18 months. That one was grueling. Through a series of misfortunes, no organs were transplanted, which is really heartbreaking when you see how much it means to the parents, who are so desperate to see something good come out of their tragedy.

At 0130, triage called me to say the OR was at 0330 and would I please be at the hospital by 0300. The hospital was 45 minutes away, but I didn’t have to shower and my bag was ready, so I snuggled up next to the baby and tried to sleep for another half hour. After twenty minutes or so I knew it was hopeless, so I kissed her and got up. Love Monkey was still awake, the night owl, so I kissed him goodbye and left. I gassed up the car, got a cup of tea and started the drive. I made it there in no time at all, given the hour. On the walk up to the unit I passed clusters of family, crying quietly.

I walked in and found the TC, her orientee and the hospital services manager, who was quite cranky to still be awake. Those girls do keep better hours than I do, usually. Why was I here? I mean, the orientee is no idiot and she probably has more nursing experience than the other two of us combined. And HS, well, she looks very cute in her scrubs and she does know the hospital, but really we only needed two of us, not four. I’m a big believer in keeping a low profile on the unit and not having a big gang of OPO personnel hovering around.

All right, to make a long story longer. I guess I need the catharsis because believe me, when I got home later in the morning, no one wanted to hear about a dying five year old. I went to the OR to make sure every thing was ready. The staff had done a nice job of setting up an empty room with chairs, dim lights and some low music playing. I was not eager to meet the surgeon. The last time I did an OR in this same hospital, with a pediatric patient, he screamed at me in front of everyone. I introduced myself when he came in, I’m not sure if he even remembered me. The tech was one of my favorites. We went over the case and the plan for extubation and pronouncement. The doc showed his humanity when he started talking about recovering from a little kid. I guess I forgave him then for the screaming.

The music was courtesy of us. Last week I was in the office and saw one of my coworkers sitting on the floor next to a CD player listening to some soothing musical interludes. “It’s music to play during DCD’s”, he explained. “Do we have to use it?” I asked. “Oh, no, it’s just if the family wants.” I quipped that I would rather have some Led Zeppelin playing when I passed, would he please keep that in mind in case I was ever a DCD. Cause I’m really not an easy listening fan.

Back in the OR, the staff was counting instruments, the tech was pounding ice and the surgeon was getting ready to scrub. I was the lookout, to tell them all to be quiet at the first sign of the patient and family. I kept thinking about the time I was the lookout at my sister’s wedding shower and she walked through the other door and the surprise was ruined. This was like waiting for some dreadful party to begin. And they did come in from the opposite direction. I wasn’t ready for what I saw. I guess I was expecting a crib because I’d heard she was small, only 15 kilos. Instead, the staff pushed a bed with a full grown woman in it, her mom, wrapped around the little girl like the pod around a pea. A train of people followed in their wake: the intensivist, the resident, both TC’s, HSM and the little girl’s grandmoms, holding on to each other.

As soon as I saw them turn the corner, I ran into the OR and told everyone to be quiet. The other TC had told me earlier that she expected the girl to go quickly. They got everyone settled. I handed the paperwork to the orientee. If you don’t know what else to do, grab the clipboard and keep track of everything. We had to write down all the times: time in the room, extubation, q5 minutes vital signs, time of pronouncement. The PICU nurse would monitor the drips to make sure she was well sedated. The intensivist walked over to mom and whispered something. She nodded and a minute later he pulled the tube. Mom was crying and kissing her. The grandmoms were crying. I was crying. I kept thinking how I was snuggling my own little girl just an hour before.

See, that’s the problem with having this job and an active imagination. I am always thinking of ways I could die, my husband could die, or the kids could die. It’s a morbid hobby and I go to it the way your tongue seeks out the empty space when you lose a tooth. Give me a situation, and I can find the danger in it. It makes my husband crazy and I’m not sure it makes us any safer. I mean, how much can you worry about? When I worked in the ER, I started to go a little nuts thinking about all the things that can go wrong, all the freak accidents that happen. When I got this job it made me more at peace, for a while, as it made me appreciate what I have. Recently, though, it’s been getting to me again, so I just try and redirect my focus until it passes.

The little girl is still taking agonal breaths in her mother’s arms. My tears have dried a little and I’m starting to wonder why this is taking so long. The other TC was certain that she’d die “right away”. The pump with the morphine is binging and then I realize that the primary ICU nurse is not in the room. She’s out in the hallway. The intensivist goes out and gets her. As discretely as they can they try to get the pump working again. By now, we’ve been in the room watching this little girl die for about 15 minutes, but it seems like hours. A few minutes after the morphine pump is fixed, her respirations taper off, then stop all together. The doc takes his stethoscope and listens, then feels for a pulse. He nods to the nurse. I look over at the other TC. She’s comforting the grandmothers and doesn’t seem to realize the little girl is dead. We only have 5 minutes from this point to make the incision. I walk over to mom, who is kissing her daughter’s forehead. I say gently, “Mom, it’s time.” Then, my coworker comes over and I start to take off the leads and other wires that attach her to the monitor. She picks the girl up in her arms and the nurse and I detach and grab as many lines as we can: foley, numerous IV’s, A-line. We walk as quick as we can to the OR next door. Someone stays behind with the family. We get her on the table and the OR staff springs into action, putting the grounding pad for the cautery on her lower back and taking her gown off. I’m helping untangle the sheets and I find two Matchbox cars rolled up in there. I try not to lose it.

The surgery starts and I go out in the hall to collect myself. The family has left. The other TC walks over to me and says, “Well that went well!” I just look at her. I know what she means-everything went off without a hitch. No problems getting pronouncement, having comfort care started or getting the OR on board. No surprises. And you do get a “high” when you’ve been up all night, running around and juggling a million things. But to say that watching a 5 year old die went well is a stretch for me. Especially when I hadn’t even planned on being in the room, hadn’t mentally prepared myself for all that. That’s just her way, she’s bubbly. The tech comes out and she’s still effervescing. He looks at me. “How’d it go?” He asks. “It was horrible.” I say.

The OR goes fine, Again, I’m not really sure why they needed me, her and the orientee are doing fine. When it’s all over they wash the little one and put a gown on her again, because her mom wants to see her afterwards. I pack up to leave.

I’ve only been out for 7 hours, but on the ride home I’m wiped out. I crank up the radio and Stone Temple Pilots fills the car. The last pediatric DCD I did was an 18 month old who died in a house fire, his mother found lying on top of him, trying to protect him. They were both organ donors. I try to imagine being at the funeral of my husband and baby, the numbness, the endless line of people offering words of comfort. I force myself to stop. As Atticus Finch said in To Kill a Mockingbird, that’s the kind of thing that leads to slow, steady drinkers.

Instead, I start thinking about what kind of music I’d like to die to. I was joking when I said Zeppelin, but now I reconsider-maybe the Rain Song would be nice. After that, I’d pick Beethoven’s Eroica, which I got as a Christmas present one year from my husband, because he said it reminded him of me. Again, I try to think of something else, but in the end I just crank the music up even louder. I want to share this whole night with someone, but how can I tell anyone these things that I see? Sometimes after work I have to choose between being down and bringing someone else down with me. Who wants that? So I just keep writing about it.

19 comments:

Susan Palwick said...

Thank you for writing about it. This is a harrowing and beautiful and deeply moving post (and I hope you're submitting it to Grand Rounds this week).

God bless you for the work you do.

KittyCat said...

I stumbled upon this post while updating my own blog. God bless you for your compassion...I believe the little girl's mum could feel your kindness.

And I understand what you mean by your running imagination - I do that too (and I try not to) even though I'm not in your line of work. Keep on writing...I hope to visit your blog again.

jasonsmom285 said...

I accidently found your blog and I've read several. I'll be back to read more. My 14 year old son died and I donated his organs only they could only use his corneas and heart valves. What a waste of all the rest of him, he was so perfect and healthy. I got the call from I guess the organ coordinator? when I got home from the ER that night. I knew right away that I'd do it, Jason wanted to be an organ donor, we had talked about it. Since he died, I do what you do. Picture ways I could die, my husband could die, envisioning accidents happening to other kids. My son was my one and only. I love how you write about your boy. My son was my Movie Boy too. He was so beautiful.I think about him all the time. You'll be hearing more from me I'm sure.

jasonsmom285 said...

oh sorry, I read some other blogs too in your links. Movie Boy belongs to Krazy Kat. I think I need a nap or something. But I will be back.

Mama Mia said...

Thank you for sharing this with us. I, too, have been present for far too many pediatric pronouncements and they are always horrible. Thank you for doing all you could to make this as easy as possible for the family.

I think the vivid imagination is part of mothers in general and nurses in particular. I have it too...

Keith, RN said...

What a story. Thank you so much for sharing it with us. You are doing such a service to so many. My gratitude and admiration to you.

TC said...

Thanks for all the support. Jason's mom, I'm so sorry you lost your son. Very, very few people die in a way that they can still donate organs. Thank you donating what you could.

When you said MovieBoy, I knew immediately who you were talking about, I love Krazy Kat. I'm the mom of Laughing Baby, AKA Toddler Tornado.

Judy said...

Thank you for sharing this. I know it must be terribly difficult for you, because you have to be there when those babies die. I find enormous hope in the fact that sometimes another life will go on because of the generosity of the family and the dedication of the organ procurement teams.

Carole Tower said...

>cjt>.

I was so touched by this moving testimony of what the men and women who work with organ donars experience in their daily lives.

May God bless all of these individuals who make organ donation their life's work. They are truly God's gift to humanity.

I pray that the little girl's family has found peace knowing that their child has been able to give life to another.

Thank you so much for sharing this with me. I will never forget it.

Kat said...

You and I share a lot in common, I find it's impossible to not relate my job as a TC to my husband and boys. Recently I did a DCD donor who was 11, almost same age as my son. Watching the child die in moms arms was one of the hardest things I have done in this job,and despite knowing what joy it will bring for other families, it didn't make it any easier. My husband thinks I am crazy and like you doesn't want to know about it, which leaves my co-workers which thank god are angels I can vent to. Sometimes I wonder how I do this, actually daily. But then I cant imagine myself doing anything different.

Mia said...

Why do you do this? Because someone has got to. Could you imagine a world where this work wasn't done?
Thank you.

Ex Utero said...

Nicely written. I have a 5 year old daugther...

cat said...

Gripping reading,
thankyou for being you, for being there, for sharing, for doing the things that so many of us could not, and for sharing with us so honestly.
blessings to you.

cat

Marcia said...

People are always thanking me for what I do (NICU nurse).

But dang, no way could I do what you do. As a relative of a recent donor recipient, thanks to you, babe.

Anonymous said...

Thanks to you and your efforts, people get a second chance at life. You really are an angel and a godsend.

Anonymous said...

Oh, and I want Green Day's 'Good Riddance' played at my memorial service.

Jen said...

Your words elicit my tears...my beautiful 5 year old daughter was what I pictured. I know I would have been the pea pod around my daughter too.

Bless you. Bless organ donors.

BreathinSteven said...

Hey TC...

I know this was, like, forever ago -- I just stumbled across this post when I was responding to comments made by PJ Gheraghty on your "this is why we do it post..." He had a link to your post.

You put into words much how I imagined... I cry when I think about it, and I cried when I read it... I can't imagine losing a child, whether 5 or 17...

I'm glad you're alive -- I'm glad you've graced this beautiful planet. I know you're taking somewhat of a break from the TC stuff -- but in the years you've done this, in your actions as well as in your stories, you've done so much for so many...

I told PJ that I think about my donor often -- that her beautiful smile crosses my mind throughout the day, every single day. And every single day I also think about people like you and PJ and so many I have the honor of knowing -- people who are our there working and struggling to keep someone like me alive -- to bring someone like me a gift from another...

You take care, TC... I'm proud of you...

Love,

Steve

Jen Faultner said...

I read this post just 5 months after my daughter received a donated heart. It was incredibly difficult for me to read, imagining what the donor family went through on the same night we were so hopeful. At the same time it was truly cathartic for me because I needed to know. Thank you for telling me what they never tell the recipients.