Schools Ponder Role As Child Nears Death

[fierceawakening]

from BFP, Bint, MissCripChick, and others:

Schools Ponder Role As Child Nears Death

As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.

In bold letters it warned, "Do Not Resuscitate."

The DNR

Comments

[nightengalesknd]

As usual, I see multiple sides of this one

[fierceawakening]

I don't so much think there aren't multiple sides as I find myself really troubled by the way this is presented. It's not so much that I think "save Katie at all costs!" as that I worry about what's being hidden and what's being ignored.

I'll post more about this when I have the time and spoons, but in the past month in our NICU we lost a 24 weeker on my watch, after doing everything we could. We sent two other babies home with hospice, one of whom is doing well and the other died shortly after arrival home. We have a fourth on the vent in the hospital who may never be able to come off a vent - and upon my querey, I learned have no home ventalator capability in my area.

Ooof. I'm sorry. *hugs if you would like them*

Another factor is that this child is seven. CP aside, ablity or inability to comprehend aside, most seven year olds have a sketchy understanding of death at best. This isn't to say that the subject shouldn't be broached, of course, just that in the case of any seven year old, the parents are going to have to be the ones

[nightengalesknd]

As far as the kiddies in the NICU, I'm OK

[fierceawakening]

don't know the parents of this child but I gather from conversations on rounds they would like to take her home. I don't think I will ever be OK with the idea that there is something that is medically possible, desired by the patient or family, and logistically infeasible. And I don't want to ever be OK with that, honestly.

*nods*

I tend not to think of CP as a terminal condition, for obvious reasons. But the truth is, there are some people with severe CP who have accompaning difficulty with swallowing and severe reflux. Anecdotally, this difficulty can be progressive. And people who have these problems can be at risk for choking and aspiration and then aspiration pneumonia

Thanks for telling me this. I had heard that some people have difficulty swallowing, and I figured this would cause higher risk of choking. But I had never heard that the problem would be progressive, so I was not sure what exactly they were saying about Katie here.

Could someone in such a situation be resucistated, spend 3 weeks in hosptial, go home and back

[nightengalesknd]

Well I'm extrapolating a bit here in terms of timing and frequency. Although I'm not extrapolating as badly as the article is. . . the more I learn about CP, the more I learn a couple of things.

1) there is a lot I don't know
2) there is a lot that other people don't know, even experts
3) there is a lot of disagrement out there
4) the questions that I feel are important aren't always or even often the ones research is trying to answer
5) some of the people who are the most knowledgeable scienticially have attitudes I find it hard to get past