[MeghanRN]

I want to make this short and sweet, without going into detail about the situation, but I want some opinions..

Terminal toddler d/t recurrent brain cancer..neurodevastated, now DNR..
not doing to well. Hospitalized..

Grandfather asked me today how much longer I thought she would live..

I was slightly taken aback by the question..

So what would your response have been?

[janfrn]

I've had this question asked of me several times and I've always been very careful when I answer it. My answer would have been, "There's really no good way of predicting that. Sometimes it is really quick and other times it's not. If I were to tell you that she'd pass away within a few hours or days and she didn't, you'd feel like I lied to you, and if I told you I thought she'd live for a couple of weeks and she passed away tonight, you'd feel robbed. All I can tell you is that when she and God (Buddah/Allah/Jehovah...) are ready, she will go. I'm very sorry that this has happened to her and to your family. I know how much you all love her. I can tell you that we will make sure that whatever time she has left will be as comfortable as we can make it, and that she won't be alone at the end. "

[MeghanRN]

Jan:

I think that is a very good response..

It was odd though yesterday before he asked it, I almost knew the question was coming... here was just that feeling in the air..

Its almost as if they are at peace with accepting that she will soon pass..

I also think grandfather wanted someone to tell him that it was ok to let the child know that if she needs to go be with god (catholic family), that she can be. That she didnt need to hold on any longer if she was ready to go. So, I gave him that peace of mind and we spoke about it for a while.

He seemed relived that I told him that, but I know that isnt what all families want to hear, hence the posted question....I know that acceptance is extremely hard and most families wont be seeking the same information that I know the grandfather was...

Its been a pleasure taking care of this baby, and I look forward to going back this AM and doing it all over again..

Thank you for the response

[janfrn]

I do think that dying kids especially are waiting for permission to die. Some part of them just hangs on until someone tells them it's okay to go. This particular family had to know that this baby was on borrowed time and that every minute they had together should be cherished. When family members ask those kinds of questions, it's signal that they know the end is near and are trying to prepare themselves for something they never will be prepared for. We owe them absolute honesty and compassion; don't think that they will ever forget what you say to them. They don't.

Many years ago when I was a fairly green nurse, I was working in a step-down nursery with mostly feeder-grower prems. One little boy that I cared for as a primary nurse had been born with a syndrome that hadn't been identified. He had orocraniofacial and limb anomalies, contractures, hypoplastic lungs and posterior urethral valves. His genitourinary anomaly had been identified prenatally and he had fetal surgery to place a shunt across his abdominal wall to allow urine to drain into the amnion. Shortly after birth he had a vesicostomy done and came to our unit. This baby was very irritable and difficult to feed. He had almost no suck and poor swallowing and you couldn't bundle him because of his contractures and the pain they caused. We fed him with a Haberman; I would lay him crosswise on my lap with his head elevated on a folded blanket and just keep him from falling off while he tried to eat. His mom and I developed a good rapport. Then one Sunday I came on to find that he had gone for a revision of his vesicostomy (which had been prolapsing) on the Friday and was just not himself. There was nothing I could put my finger on, but he was just not right. Anyway, the grandparents came to visit in the early afternoon and they were really hoping that he'd go home soon. He was already two months old and had never been outside the hospital. The revision was supposed to be the last thing before he could go, since his mom had been learning his care and was feeling comfortable and ready. So I told Grandma and Grandpa that if things went according to plan and the baby looked good, he'd probably be discharged later in the week, since there didn't seem to be any reason why not. I truly believed that.

At 10 am the next day I got a call from the manager of the unit. The baby had gone into respiratory arrest less than an hour after I left; followed by a cardiac arrest. The resus went on for nearly 5 hours before the mom told them to stop. He had been in DIC for some time by then and had never had a sustained return of circulation. I was devastated.

At the funeral, Grandpa came up to me and said, "You told me we'd have him home by the end of the week. But instead we're burying him." Those words have stayed with me for more than 11 years. I think of them every time I'm tempted to make a prediction that I know could be totally wrong. I don't want to ever have a grandpa say anything like that to me again.

[MeghanRN]

Originally Posted by janfrn

At the funeral, Grandpa came up to me and said, "You told me we'd have him home by the end of the week. But instead we're burying him." Those words have stayed with me for more than 11 years. I think of them every time I'm tempted to make a prediction that I know could be totally wrong. I don't want to ever have a grandpa say anything like that to me again.

Wow.

Point well taken. Its amazing how words can cause such emotion and such distress..I guess we sometimes take for granted what we say..

I was actually mad at most of the nurses today on the floor. The night shift nurse couldnt handle her anymore and didnt take the assignment. This child is dying, and there is nothing else we can do about it but make her comfortable. My job today was just that, as well as yesterday. I took pride in keeping her clean, and comfortable, and medicated to relieve pain/agitation. I also comforted the family, and helped when need be. I also gave them their space..

I just couldnt understand why other nurses who had taken care of her before were suddenly refusing to take care of her. I know that nobody wants any patient to die on them, but if it happens, shouldnt you have provided the best possible care, before and after death?

I've never had a pedi death (when i am present) . I've been to pedi funerals. I've taken care of DNR children, and just kept them comfortable..other nurses have had pedi deaths, so why were they so afraid to take care of her?

I think im rambling, but my husband doesnt understand, and I needed to slightly vent..

As an update, she was given 24-48 hours today..I got hugs from family at the end of the shift, and mom said something along the lines of 'i'm glad you were here today'. Grandfather thanked me numerous times, and told me that last night he told her that it was ok to go. It meant the world to me to have that mom say that..

*sighs*

I'm off for the next 3 in a row..I pray she goes peacefully and quickly - I've never called to check on a patient before, but I feel the need to call tomorrow..

Thanks for listening..

[janfrn]

Do you suppose that the other nurses are feeling their own anticipatory grief and feel unable to care for her? There are some kids that just get under your skin and some people who can deal with that and others that can't. This little girl is blessed to have you there for her and family has acknowledged that in the nicest possible way. You've done a great job of keeping them involved and in providing for their emotional needs. I too hope that her passing is gentle and easy. It seems this wasn't your time to be present for a child's death, but it's a good lead-in. This sort of death is far easier to get through than those chaotic, sudden dramatic ones. Your day will come and I hope it's one of the first sort.

[MeghanRN]

I do think thats what it is, other nurses are feeling grief and others have become so close to her, and also knew her before the end stages and have seen her smile and laugh and talk to mom and dad.

I Guess its because I havent. I've had her the last 2 weeks, for about 4 days total - shes always been the same.

I guess I just feel that we should provide the best care possible, no matter what the situation..no matter how sad. Now, I know there I some that I wont be able to do, which I guess would put me in the shoes of the other nurses..

I was just upset and mad last night that everybody kept saying ' I dont know how you can take her 2 days in a row' and ' i dont want to be here when it happens' (neither do I but if it happens..I cant stop that), and 'I just cant take care of her, its too sad' (yes, it is sad..but she deserves the best care possible, doesnt she??)

*sighs*

I hope its quick and painless..for child and parents sake..

[MeghanRN]

Originally Posted by janfrn

This sort of death is far easier to get through than those chaotic, sudden dramatic ones.

This is why I dont want to work or be floated back to PICU!! I dont think I want to be around when this kind comes...

[AliRae]

Originally Posted by MeghanRN

I guess I just feel that we should provide the best care possible, no matter what the situation..no matter how sad.

I was just upset and mad last night that everybody kept saying ' I dont know how you can take her 2 days in a row' and ' i dont want to be here when it happens' (neither do I but if it happens..I cant stop that), and 'I just cant take care of her, its too sad' (yes, it is sad..but she deserves the best care possible, doesnt she??)

This is why I ended up as the death and dying" nurse this summer and fall. I'm glad there are nurses out there who share my perspective. That, yes, it stinks. And yes, it's hard. But we have to do the best we can for these families. I'd much rather it be me taking death after death than another nurse who is mentally and emotionally checked out. I don't think the kiddos get the proper care and pain management in that case.

So keep up what you're doing. Call in, see how she is. Chances are, if anything happens, someone will give you a call since they know you're invested in her. I'm forever getting calls about my kiddos. =)

[MeghanRN]

Originally Posted by AliRae

I'd much rather it be me taking death after death than another nurse who is mentally and emotionally checked out. I don't think the kiddos get the proper care and pain management in that case.

Thank you.

I kept saying that the past 2 days - If I dont take care of her, then who will? Whose going to give her the care she deserves and not avoid her and the family like the plague?

Funny thing is, I've only had this little angel for 4 shifts out of the past 2 weeks..knew nothing of her before that. I know all of the PICU nurses (I'm step down unit) have come to see her and all come out crying..they knew her before the neurodevastation..