When chronic kids die

[anon456, BSN, RN]

I am a newer nurse and work on a unit where there are many chronic kids who come in and some of them are with us more than they are at home, for months or years at a time. They are like little mascots on the unit, and the nurses know them well and we try our best to make their lives at least tolerable. When they finally pass-- either the families make that decision or the kids do in spite of all our medical technology-- we nurses both cry and breathe a sigh of relief. Nursing on such units is a mixed bag. I have had many moments of joy with kids and their families. It is fulfilling to be able to make a kid smile, or to at least improve their sats with good suctioning. It is nice to be able to provide education and support to the families. I have cried happy tears when a kid who has been through an ordeal can finally go home and step into a somewhat normal life. I also cry bitter sweet tears for our chronic kids when they pass, because finally they are at peace, no more machines beeping, no more sticks, no more suctioning. And yet I miss them because we are used to them being on our unit and in spite of all their disabiities and illnesses, their unique personalities often shine through. It is a blessing to get to know them. I hope as they earn their angel wings they are able to go to a better place where they can truly shine.Just sharing my thoughts in a safe place. We've lost a couple of long-term patients recently.

[Double-Helix, BSN, RN]

I know just what you mean. It's heart breaking any time a child dies, and especially hard for the staff when it's a child that you know very well. However it's also a blessing because you know that they are in a much better place with no pain, no health problems, where they can be happy. Even though we know that, it still hurts those of us who are still here.

[wooh, BSN, RN]

I'm happy when the chronic kids finally pass. At least those that we've been keeping "alive" but not well enough to play and be a kid. A couple of CF kids have left me heartbroken. But the neuro devastated ones... We can keep a kid with a totally broken brain alive with a trach and TPN for way longer than we should. Those kids? Once they finally pass, I know that Jesus is a super fun babysitter, letting them finally run and play until their families eventually get to have them back. And that makes me happy.

[KelRN215, BSN, RN]

I, too, am happy for these children when they are free of their earthly bodies and all the suffering they've endured. No more chemo, no more radiation, no more surgeries. There is sadness but there is relief as well.

[LockportRN]

This is exactly why I could never work in peds. It was bad enough on my clinical rotations to have to swab the nose and throat of a boy of about 4 and have him cry and beg his mom to save him...from me! I could not do this for kids on a daily basis. I remember once when I worked for a newspaper when I was 18. A woman came into the office and had her daughter with her...bald, completely bald. She was there to put an article in the paper about a fundraiser for her terminal daughter. My heart was crumbling on the spot and I am sure that my eyes shown brightly with tears that I knew I had to hold back, but still this sweet little angle walked over to me and put her hand on my cheek and said "Don't worry. It doesn't hurt.", all the while smiling with the eyes of a little girl that was beyond her age and came to accept her condition. As soon as they left, I started balling like a baby.

Each of you peds nurses will get your wings for all of the love that you give, the care that you render to these helpless hurting souls. Even when it is hard to do. :bowingpur

[anon456, BSN, RN]

This is exactly why I could never work in peds.

I guess I never thought I could either, but this door opened up to me and I decided to try and see. My unit has a lot of special needs chronic kids, not so many "normal" kids. I sometimes float to other units and I really, really dislike holding down the healthier kids and poking them or something. I would much rather work with the kids on my floor, most of whom are at least partly in their own worlds. Many of whom have feeding tubes, PICCs or ports, and need a lot of loving. :-)

It's good that we all know what we are comfortable with. And your story really moved me. I think kids are so brave. I did some training in the adult world and many of them have a harder time handling things than the kids do.

[LockportRN]

Well anon, when you put it into that perspective, I guess I could see your point. I do love babies and children. I guess it just gets to me when you see the ones are so tired of 'it all'... being poked and prodded and they are done with it but have little or no say as to when it should be stopped. Sometimes, the parents in holding onto all hope, keep up with the tests and treatments long after it all should be stopped. Long after some of the kids want it to stop and as nurses, we have to keep up with the parents wishes. And as a parent and grandparent, I do not blame them for I am completely unsure if I could ever 'stop' either.

You are so right, it is good that we all know what our comfort levels are and even better that there are people like you that are not only willing, but enjoy and prefer to be in these situations and even thrive in them. So much better for these kids, their families and ultimately society as a whole. You are a wonderful addition to the practice of nursing!

[anon456, BSN, RN]

sometimes, the parents in holding onto all hope, keep up with the tests and treatments long after it all should be stopped. long after some of the kids want it to stop and as nurses, we have to keep up with the parents wishes. and as a parent and grandparent, i do not blame them for i am completely unsure if i could ever 'stop' either.

yes i absolutely agree with you on this! tough for all involved, but i do enjoy giving some love to the little ones while they are still on this earth-- and so glad it's not in my hands to decide when it's their time. i can't imagine being in the shoes of some of those parents/caregivers.

[~PedsRN~, BSN, RN]

We have a few of these children. There are a few that when they go.... I honestly can't think about it. And they will go. And I will be heartbroken.... but I will know that while these children were in my care, they knew what love was. They knew love. That is how I will get through it.

And that is all I will say about it, because if I think about that possibility too long, it hurts my heart.