I'm never primarying again, y'all

[elizabells, BSN, RN]

This is so awful. My primary is six and a half months old. He was a CDH-er, was on ECMO. He almost got better in August and September, got him down to 30% CPAP, but went into respiratory failure at the end of September. Several runs on the oscillator later, he got trached last week. It's made him worse. He's barely double his birth weight. His head is enormous, and he has these skinny chicken legs. His SVC seems to be failing him, and his entire chest is covered in petechiae and burst capillaries. He's suffering. My unit (as Steve and I have been very vocal about on this board) undersedates ridiculously. The fact that I secured standing orders for q12 Ativan and q6 MSO4 last night is a sign of how bad it's gotten. He's so labile we don't even change his diaper unless he's sedated. They're tolerating PCO2's in the 100s. I bagged him for 25 minutes last night and counted a victory when his sats held above 75. His parents, who are the loveliest people I've ever met, are also members of a religion that doesn't hold with DNRs, and certainly not with withdrawal of care. I truly think they'd let him go if they wouldn't be ostracized from their close-knit community. He has four primaries, and all of us are losing our minds. We're all crying during and after work. The other nurses are starting to talk about us, and not in a good way. I don't know how much longer I can do this. We're talking about calling the Ethics Committee, which I have not seen done in the 18 months I've been on the unit. We're all talking about quitting, which we won't, really, but it is coming close to burning us all out. I've gone from 2 cigarettes a day to almost a pack. We can't not take care of him, though. His parents need nurses they can trust. Most of the other nurses can't stand the baby because he's so needy. We refuse to let him die with someone who doesn't care about him.

Thanks for reading, if you made it this far. I should sleep, because I have to go back and do it again tonight. May God forgive us.

[Hellllllo Nurse, BSN, RN]

((((((((elizabells))))))))

[llg, PhD, RN]

What happens when you're not there? Does he get good care? Can you not trust your colleagues to give him decent care?

The surest and quickest route to total burnout is the thinking that you are the only one who help this patient. If you can't "let go" a little to give yourself some breathing room, you will surely burn out -- and then you will not be able to help anybody, pehaps ever again. That's not good for you and its not good for the rest of the world who could benefit from your knowledge, skills, and compassion.

Is there anyone in your unit who you can talk to who can help you develop a plan so that you can be comfortable with his care when you are not there? I'm thinking a Social Worker, or your unit educator, or CNS, or someone like that. Once you have a plan in place that allows you to take a little break (a few days of NOT caring for this patient now and then), then you can begin to develop a therapeutic relationship with this patient that doesn't destroy you in the process.

Get some rest ... then make a plan to get some help -- both for you and for this patient. Don't take it all on your own shoulders. Get help.

Take care,

llg -- (who has spent 16 years of her 30 year nursing career in NICU's)

[elizabells, BSN, RN]

What happens when you're not there? Does he get good care? Can you not trust your colleagues to give him decent care?

In all honesty? Not always. This is a child with terrible bronchospasm - the moment he starts fussing you MUST fix whatever the problem is or you will find him with sats in the 40s and HR in the 60s. More than once I (and his other primaries, as we've discussed among ourselves) have gone to break having given a full report to the covering nurse, with very specific instructions as to how to get him back, and come back to an empty pod and a blue baby. His parents actually asked to have him moved out of one of our private rooms (normally a very hot commodity) because he was basically being ignored if one of his primaries wasn't there.

I do know that I need help. I'm even thinking of EAP, at this point. I know this isn't healthy. I know he's not my baby. I just don't know if I could face his parents (who have noticed and pointed out the days I and his other primaries have taken "breaks" to take care of other kids - they actually went to patient relations when a few weeks went by with no primaries) if I just stop.

You made very good points, llg. I'm so new at this. I guess I just have to do it and stop overthinking it.

[canoehead, BSN, RN]

I think your committment is commendable, and clearly you are an excellent nurse.

Saying this as gently as possible- if you are micromanaging the care other nurses give with explicit instructions and constant watching they are less likely to want contact with this baby, and not likely at all to care about him the way you hope for.

Not saying it's OK, or anybody's fault, but it is true I think.

((elizabells))

[prmenrs, RN]

(((Liz)))

Lots of things going on here, not the least of which is the lack of support from your colleagues. The second biggie is that you're being manipulated by the parents. It's normal for them to try and control the care of their baby. In demanding your undivided attention, that's what they're doing, but it is NOT fair to you or the other primaries.

On some level, they know their child may [unfortunately, probably will] die, and if they can just make sure the nurses they trust take care of him, they are bargaining he'll make it. Recognize the grieving steps here? Denial, bargaining... Any chance the social worker and/or pastoral services could spend more w/them? They need it desperately, and deserve it to help them deal w/a major family crisis. Families often break up after having a gravely ill child, esp. when the suffering is so protracted.

Try to identify someone not involved w/the care of this child. Ideally, that would be someone in the unit leadership: charge nurse, nurse manager, but often it is someone who has "power" in the unit. Can you have a "conference" w/this person? Tell them you need help to provide care for this baby and his family. The primary team is not solely responsible for the care of this child. The entire unit needs to pick up the slack. It is not acceptable for you to go to lunch, and come back to an incipient disaster.

If you do get Ethics involved, it may give you a bargaining lever to increase pain control. Are you using a pain scoring tool? What are the scores? I'm gathering from you and Steve, this unit does not do well in that department, despite the fact that it's a real big deal for JACHO. (I'd be sooo tempted to put in an anonymous call, much as I hate JACHO)

Lastly, you absolutely MUST take care of yourself (actually, all of the caregivers). In your off-time, make time to laugh--watch a movie, TV show that makes you literally laugh out loud for 1/2 hour or so. Take care of your spirit: pray, read something inspirational, whatever is your style. Get a little physical exercise. Eat a meal w/a good friend, maybe one you haven't seen in a bit. Be aware you are balancing out all the stuff from work.

I'm well aware I can't solve your situation, and maybe what I'm suggesting isn't doable for whatever reasons. In that case, just know that I support you whatever you do, and I'm certainly praying for the best outcome possible for your primary and his family.

[llg, PhD, RN]

We all seem to be saying similar things here, elizabells. GET HELP for both him and for yourself.

1. Get him the help he needs by discussing his case with someone on your unit who can help you problem solve -- someone with more experience and authority who can relieve you of some of the burden you are feeling.

2. Welcome other nurses who provide care for him. Don't chase them away by nit-picking their care because it doesn't match yours. You need their help and the respite they can provide for you.

3. Don't let the parents manipulate you into taking on more responsibility than you can handle. Set limits. If you are going to stay in the profession of nursing, you need to learn to set limits on the demands that other people place upon you. Your ability to give and give and give is not limitless.

4. Take some breaks ... and develop your stress relieving activities. We all need them. You do too. Locate your resources (such as EAP, senior staff, unit educators, social workers, etc.) and use them.

Take care,

llg

[ginger58, ASN, RN]

Ethics committee is due. I'm glad that I never had to deal with this when I worked NICU. Heartbreaking. If the committee can't come up with a reasonable solution then I'd take myself off the case.

[elizabells, BSN, RN]

Thank you all for your suggestions. I think I may tag out for a while. I was talking to his mom last night, and she says to me "[FOB] and I were talking, and we realized that you've been his nurse for every bad night he's had!" I was speechless. She started stammering and tried to reassure me that she didn't think it was my fault, it was just that I had him so often and really she meant that she felt bad for me, but it hurt more than it had any right to.

I do want to say, sort of in my own defense, that the "specific instructions" I referred to in my OP were basically just "he has really bad bronchospasm, so when he starts to desat it's best to get to him right away, and here are the things that work." But again last night, I got back from dinner to find his trach had disconnected, the vent was alarming, he was desatting and cyanotic, and there was no one around.

His PCO2 went up to 180 yesterday. He has to be suctioned so often that his trach secretions are getting bloody. My charge nurse gave me a pep talk last night; told me I was a great nurse and she really admires how much I care about him, but we are torturing this baby. He's either sedated or screaming, all the time. A six month old baby should never have the look of terror on his face that I see on his every night.

[prmenrs, RN]

As I said before, I believe the parents are manipulating you, and it's because they are so powerless in the overall picture. Unfortunately, you are bearing the brunt of some of their misery. I'm sorry. It IS "nothing personal", but that doesn't make it not feel that way.

On another note---is he allowed Tylenol? That might actually relieve some pain w/o snowing him so much. And it's fairly benign. (Don't let him drink while he's on it. jk)

[Imafloat, BSN, RN]

What a horrible situation for everyone involved. I believe that the ethics commitee needs to be made aware of this situation. I commend you for continuing on, I can tell this situation is heart wrenching for you.

His parents are manipulating you, but I agree with whomever stated that is their only means of control in this situation.

I really have no advice, I just wanted to give you some support and tell you that I admire you.

[fergus51]

I'm so sorry for you. I know what it's like to look after a baby like that. I think the other posters have given you some excellent advice. Get the ethics team involved and step back a bit from that family.

If you think the other nurses you work with are incompetent or uncaring, you may want to change to another unit. That may sound harsh, but you shouldn't work somewhere if you can't trust your colleagues to provide decent care. You should not be leaving your shift thinking that you and a small group of other primaries are the only ones who will really care for that child well. It's unhealthy to have so much pressure on yourself.