[janfrn]

So sorry about your grandpa, but congrats to your uncle! We Canadians are a special breed!!

As for RSV on ECMO, we've done it a few times in the last while. I'm not saying that we should be doing it, only that we do. Because we can. The kiddie we have on now is a previous coarct who came in with respiratory distress at 0620, arrested at 0710, had a 29 minute resus with five rounds of drugs, failed conventional ventilation, failed HFOV and has now been on ECMO at full flows for oh... four weeks. He got a chest tube the other day to drain his pleural effusion... The one before that was an infant who if I correctly recall was previously healthy and only needed a few days of support. And last spring we had a previously healthy gal who came in with adeno who was on for 8 weeks, a full 56 days, then taken off for celestial transfer. Horrible! We aren't allowed to let kids die in our unit. Until they've started to decompose. I hate that part of it.

[km5v6r]

We aren't allowed to let kids die in our unit. Until they've started to decompose. I hate that part of it.

That is the part of PICU I am having the most difficulty with right not. We recently had a 4 yr old with a history of liver/small bowel transplant develop severe rejection. The child walked in to the PICU but quickly ended up on the vent. From there it was the HFOV then CRRT with the catheter placed transhepatic because there were no other vessals. 4 chest tubes, 3 different pressors, massive fluid overload, skin on the extremities and pressure points like the ears breaking down despite everything, massive pneumoperitonium and discussion of ECMO. We don't do ECMO in our PICU. The transplant surgeons even said they would have a CV surgeon "crack the chest" to place the needed access. Thank God the CV surgeon said NO. The hardest part was when Mom asked the transplant coordinator "how do you know when to quit?" The coordinator responded with "Oh don't worry. The kids always seem to have a way of letting us know when to stop. Until then we will do everything possible but when he lets us know it is time to stop we will." The parents actually trusted that these medical professionals would recognize the ending point and let them know it was time to let go. The child was coded. The coordinator was right. The kids do tell us it is time to stop. The coordinator didn't say we would listen.

[janfrn]

Originally Posted by km5v6r

The kids do tell us it is time to stop. The coordinator didn't say we would listen.

And isn't that the greatest source of moral distress? Should we amputate all four limbs to the nub to "save" a kid with meningococcemia? Should we start CRRT on a kid whose seizures were uncontrollable and whose EEG looks like ___^____^________? Should we reintubate a teenager with spastic quadriplegia who has had multiple prolonged respiratory arrests with profound hypoxia and hypotension and is comatose? Just because we can doesn't mean we should. Sometimes God has to be in control!

[WarEagle4Life]

It's a pretty heavy RSV season in NC. Several babies in our PICU have RSV now and the general Peds floor has quite a few.

In 10 years of working in PICU (either as a secretary or RN), I can't recall having placed an RSV'er on ECMO.

Really weird in our unit right now - we have 2 kiddos on PD, both with HUS from pneumococcus. One is on 3 pressor, the other is heading in that direction.

We're a 12 bed unit and have been running non-stop with a full census since just before Christmas. We send 1 child out just to get another 1 or 2 to take the place.

Just left this afternoon - we filled all 12 beds and have only 1 possible mover - the rest of the kiddies are all ventillated and have no hope of coming off the vent for the next couple of days.

Jan - loved hearing about BC! Thanks!!

Cindy

[AliRae]

Just talked with one of our peds nurses yesterday, after noticing in the computer that PICU was the only unit in the entire children's hospital with open beds (as I knock furiously on my wooden desk here). She said they're totally slammed with RSV kids right now. So yay for our floor doing a great job and keeping them from coming downstairs!

And as a response to the "we aren't allowed to let kids die until they're decomposing" comment ... dang if it isn't true where I work, too! It kills me every time. Over the summer we had 2 drowning babies side-by-side who we were keeping going for no apparent reason. They actually weren't on too many pressors at one point, and the HNs used to pair them. Holy cow ... after 12 hours of that assignment, the nurse was almost always in tears. I have some major ethical issues with what I do sometimes. Like the agenesis corpus callosum newborn who had infarcted his spinal column and was not functional below his neck (or, I guess, above it, for that matter) ... and they went ahead and did open heart surgery on him to correct ... I can't remember what. But honestly, just because you're a new heart program does NOT mean you should be practicing on poor little ones like that!

*stepping quietly off my soapbox*

[janfrn]

I hear you AliRae! Many of my coworkers feel the same way. We seem to have a large difference of opinion from our doctors so often and it makes me angry when I think about how we torture some of our kids long after God should have had them. I often wonder how certain of our docs sleep at night when I've been in the room while they've told a family that the course of treatment they're recommending might keep their child alive for another day or two, but don't tell them that the child isn't going to be aware of much and certainly won't be hugging them or saying "I love you mommy". I can totally understand the parents' desire to have one more day, to have everything that can be done done, but I think they need honest and realist information. I hate that they're offered false hope and that the families aren't told that the child they knew before the illness is gone and never will come back. Not that I would suggest that what happened to us is right either, though. The evening of the day my son had his strokes, the neurologist told me (before he knew who I was) that Adam wasn't going to survive the night, and if he did he would be a vegetable. And right up to the day I took him out of that hospital the doctor refused to accept that his prognosis could be wrong. So part of my brain was prepared for the outcome we have, even though I hoped for better, but I think it could have been handled more sensitively. The other physicians who were invovled in his care were really good at making sure I had accurate and detailed information but were honest, to the point that we'd discussed the end of the road and what we'd do if we got there. They are my example of how to inform families, and I use their example all the time. Adam is not the child who went into that hospital all those years ago, but he is happy and healthy and loved by everyone in his world. When I talk to families about those less-than-perfect outcomes like his, I don't downplay his limitations and how much work it is to care for someone like him, but I give them food for thought about where they want to go in the process. I think they make more informed decisions when they can talk to someone who lives with the consequences of extreme illness so that they can try putting themselves in my place, and imagine how they'd cope, how theri family would be affected and how they want their lives to proceed.

Your anecdote about the boy with agenesis reminds me of someting I've heard our cardiac surgeon say more than once when confronted with a multi-organ train wreck or neurologically devastated child he's operated on, "But the heart is good!"

[AliRae]

jan- I'm glad there are nurses like you out there. I often find myself acutely aware of my youth and inexperience at work. Parents ask me if I have kids of my own or look at me with the "You're 23 - how do you have ANY idea what we're going through?" face. I try to pull the "Oh, I have enough kids here at work! *grin*" line, but it doesn't always work. Fact is, I'm young and I don't actually know that much about life. It sounds as though your experiences with your son (Adam, right?) have put you in the unique position to be truly empathetic with your patients' families. I guess I just find myself wondering whether I'll ever be enough of a "grownup" to be the PICU nurse I really want to be.

And, to keep this post even remotely on topic, current RSV count on the unit is down to 1. But we have 2 or 3 asthmatics. =)

[janfrn]

AliRae, you're the same age as Adam is. He's the reason I am where I am and why I chose it. I wouldn't worry too much about being young and childless... you're getting older every day ( ) and some of the most competent and compassionate PICU nurses I know have no children. It isn't a prerequisite for the job!

There was a report in today's paper that there have been 168 kids with RSV admitted to Capital Health region hospitals so far this season. We only make up about 30% of the province, so those numbers province-wide could be as high as 500!! Who knows how many more there have been who weren't admitted...

[km5v6r]

Thankfully we haven't had any RSV kids ...yet. I think they are probably going to the Children's hospital in town. RSV with our transplant kiddo's would be the end. We counted up and since Nov 1st we have lost 15 kids. And we aren't done yet. There are at least 3 more in the unit right now that should be allowed to leave. No one can remember a time that has been this bad. My manager had a counselor from the EAP program come in for a mini-inservice on grief. It was good to talk and realize all of us are feeling the weight right now.

[AliRae]

Originally Posted by km5v6r

..with our transplant kiddo's...

What kind of transplants do you do?

I'm saddened to hear that you're all going through such a rough time. For whatever it's worth, you'll be in my prayers.