Family wants to keep life support for girl brain dead after tonsil surgery #5

[Tawny]

I fail to see how her corpse is being protected.

NOTE: This may be disturbing for some.

January 3, 2014

"She has not had evidence of bowel functioning (sounds) for weeks. Yesterday (January 2), she passed some stool that was clinically consistent with the defecation of the tissues lining the bowel (I.E., her body is sloughing her gut)."

"Although we are applying inhaled therapy twice daily to improve the body's "pulmonary toilet" (its clearance of pulmonary respiratory secretions), it's secretions are continuing to change adversely with time. They are now more malodorous, change in color (sometimes tan, creamy or bloody) and thicker in consistency."

http://media.nbcbayarea.com/documents/HeidiFlori.pdf

Sadly, if the family does not understand brain death and how the body dies, they may take the passing of that stool as a positive sign that the body is still living

 

[CHERIE.T]

Sadly, if the family does not understand brain death and how the body dies, they may take the passing of that stool as a positive sign that the body is still living

Tawny, I didn't even think about that possibility.
Bet you're right.

 

[otto]

Nature makes that decision for us pretty quickly. But I thinks squat reasonable varies on a case by case basis. It is rare for families to hold on for long with hope after brain death and only a few have religious beliefs that mandate the body by preserved. So I think the shrieks about "precedent" reflect hysteria more than reality.

Also, those who believe Jahi's corpse will visibility rot in front of everyone's eyes need to research a bit more. Her heart will stop soon, within days, I'm betting.

Read Dr Flori's report if there is any doubt about whether the corpse is visibly rotting in front of everyone's eyes. Here is the link again: http://media.nbcbayarea.com/documents/HeidiFlori.pdf .

 

[newmrsc]

You know that fighting for justice for a person who died as a result of being the victim of crime is completely different than what we are discussing here. Come on now. IMO, it is intellectual dishonesty to pretend that days and weeks of passionate outrage against this family and disbelief at their actions and feelings has anything to do with protecting Jahi, her corpse, her siblings or fighting for justice for her.

I respectfully disagree. I believe many of us are very concerned about the body of Jahi and what is happening. To me it is extreme indignity, and it's likely to be harmful to this family, IMO. They may think they want this, but will they feel the same way if it's a horrific process of watching her body decompose? There are reasons these laws exist. And I think this case has opened up a major concern about this becoming acceptable, that families can decide when they're ready to decide a person is deceased rather than laws and medical professionals, so that this situation would be more commonplace. From the beginning of this case I have maintained that families are, in MOO, NOT the best people to decide these issues because it is simply too emotional, and that's one reason to have these kinds of laws so it isn't families deciding when it's time to pull the plug on a deceased body, in the event that their grief and denial is such that they can't get to that place.

I've personally seen a lot of intelligent debate here and yes, at times we've been dragged into the circus of it and particularly the uncle's over-the-top comments about the money, but I think that's par for the course when the family reaches out to the media. If they wanted the public left out, they could have quietly fought this through the courts, but they have taken every opportunity to make comments to media. That seems to have quieted to some degree, but the uncle was on tv last night and the lawyer was still making accusations yesterday morning. I expect more will come when Jahi's heart has stopped. JMO.

 

[Kaliste]

I don't know if I can type this post...but will see how far I get, I guess.

This past summer brought with it the deaths of 3 family members, including my husband's mother and my mother who died 3 weeks apart. His mom's death was somewhat expected as her health had been steadily declining for several years--though it was still a shock when we showed up for a visit only to discover she'd passed away 20 minutes before we got there.

My mother's death 3 weeks later was completely unexpected. As the ER doctor showed us the results of her scan that night showing massive cerebral hemorrhage, we had to intellectually accept her imminent death immediately--though as of today, I know I'm still avoiding dealing with it emotionally. We had to because there was our dad (her husband of 63 years) to support and comfort as we gathered and waited out that long, bad night...and then a funeral to plan to adequately honor her memory and to love on Dad and all the people who'd had a part in loving her all these years. I guess I'm sharing this to say I understand in a real way that grieving can take years to really sink in and/or accept when it's close family. We can surprise ourselves with the things we say and do under the stress of it, sometimes. So, for me, while I concede that the family (especially the uncle) has made some very unfortunate remarks (even damning ones that are likely to be totally unmerited and unfounded), I'm willing to offer them some grace in measure of how close they were to the deceased.

That said...if ANY medical professional or ANY legal professional had lied to me or misrepresented to me my mother's condition during a time when I and my family were at our most vulnerable, my disgust and anger would probably know no bounds. That is what angers me about this case. In these situations people want to be able to trust the professionals involved...they need to, because they need the truth no matter how much it hurts. So much of this case as it escalated seemed to be an orchestrated uproar by a few supposedly professional people claiming outrageous things and who seemingly have the brains to know better. That is what makes me angry, because if I sense they're not stupid, then that opens up the possibility to me that they're deliberately ignoring the truth and manipulating a grievous situation for some lesser, personal gain. My own response to that sort of possibility is usually to try to channel my contempt for that into some sort of positive counteraction (from twitter posts to article or editorial writing). All we can really do if we believe a certain media case or situation has bigger legal/moral repercussions (and I do think this one does) is to try our darndest to respectfully call out what's false and wrong, and to try to trump it with what's true or good.

I'm so sorry That's a lot of family tragedy to go through in such a short time. Thank you for your post, I understand it wasn't easy to share.

 

[otto]

Sadly, if the family does not understand brain death and how the body dies, they may take the passing of that stool as a positive sign that the body is still living

If the family chooses to not accept what six experts have told them, then they most likely will invent alternate explanations for what they see. Their lawyer should help them understand what has happened, rather than encourage them to doubt experts and believe that dead people can come back to life.

 

[newmrsc]

Nature makes that decision for us pretty quickly. But I think what's reasonable varies on a case by case basis. It is rare for families to hold on for long with hope after brain death and only a few have religious beliefs that mandate the body by preserved. So I think the shrieks about "precedent" reflect hysteria more than reality.

Also, those who believe Jahi's corpse will visibility rot in front of everyone's eyes need to research a bit more. Her heart will stop soon, within days, I'm betting.

Regarding precedent, I'm not sure that's true. The judge issued a TRO and then extended it, when there didn't seem to be much legal basis for that decision. There may still be outstanding federal claims challenging 7180 regarding death on religious grounds and privacy grounds. Going to the media has brought a lot of support for that position as well as misinformation about brain death. Public opinion can be a driving force in making decisions, and judges make decisions sometimes that don't make sense. It may not be likely, but this case has been an exception. And exception invites more exceptions. JMO.

 

[pukasonqo2]

You know I am starting to think there is alot we do not know. something stinks here. I still have not seen a time for recovery, before the transfer to PICU. I have seen that it was up to 45 minutes in PICU before the bleeding started. I know in the past you are in recovery till you are awake and in stable condition before being moved.

^^
my DD was transferred straight to PICU after open heart surgery, we were told we could come and see her even though she was still sedated, as far as i know she never was at the recovery bay. i think kids who undergo major surgeries are transferred to PICU because of nursing ratios (in oz is 2 nurses to a patient) and possible complications, once they are stable they are usually moved to a surgical ward or a speciality ward eg: cardiology. This proccess can take days depending in how fast the child recovers or any complications that might happen post op.

Jahi had very complicated surgery so being transferred to the PICU was the best option, there is no hidden agenda there

 

[Karmady]

Read Dr Flori's report if there is any doubt about whether the corpse is visibly rotting in front of everyone's eyes. Here is the link again: http://media.nbcbayarea.com/documents/HeidiFlori.pdf .

I'm sure there are outward/visible signs, as well. But just the knowledge is enough. To think I'm sitting there looking at my child knowing that her brain is liquefying in her head and her digestive system is rotting, etc. would be MORE than enough for me. gah!

jmo

 

[Donjeta]

There might be problems maintaining the circulation in the extremities because her blood pressure is dropping (unless the new hospital has her on drugs to control that?) and that could lead to visible changes but if it goes so far it probably doesn't take long for the rest of it go as well.

I wonder what the new hospital is telling the family, if they're saying that the child is brain dead and there is no hope of recovery but we're trying to treat her with dignity and keep her heart beating in her last moments or if like Dr. Byrne they encourage false hopes, insist that she is not brain dead and may still recover because we have treated lots of brain dead who recovered, and point out spinal reflexes and myoclonic twitching as proof that she is not brain dead, she's moving. The first wouldn't be that bad but the second would imo be totally unethical. I don't know, the uncle said that the hospital believes like they do but it may have referred to many things.

 

[Donjeta]

Sadly, if the family does not understand brain death and how the body dies, they may take the passing of that stool as a positive sign that the body is still living

It might be interpreted as evidence that CHO refusing to allow feeding damaged her intestines.

 

[MaybeNotToday]

it seems like it is getting a little personal and passive aggressive in here so this is my chance to chime in and just thank everyone here for sharing some great links to good articles, your knowledge, your ideas, your thoughts and insights. Jahi's situation has made a lot of people think about things that are (a) tough to think about and yet (b) important to think about. IMO too of course. Thanks all.

Thank you- right back at everyone here too.

Personally, I have found this forum to be VERY intellectually stimulating. I consider my standards high too . It's refreshing to have so many well written and thoughtful posts in one place!

 

[LambChop]

Nature makes that decision for us pretty quickly. But I think what's reasonable varies on a case by case basis. It is rare for families to hold on for long with hope after brain death and only a few have religious beliefs that mandate the body by preserved. So I think the shrieks about "precedent" reflect hysteria more than reality.

Also, those who believe Jahi's corpse will visibility rot in front of everyone's eyes need to research a bit more. Her heart will stop soon, within days, I'm betting.

At some point if her body is breaking down won't her heart just stop? It's a tough call for a mother to make for sure to make that decision to stop all support for her child. I find it hard to believe any facility would allow her to decompose when they have other patients there. That tells me her body has not reached that point, at least not completely. jmo

 

[Wolf Dreamer]

I think that is why this is so horrifying for people that understand brain death. People that do not understand brain death seem to think that what is happening with the body is part of the recovery process. I can't imagine that anyone that understands brain death would advocate this treatment of a dead body.

Here is Dr Flori's report. There is nothing dignified about what is happening with the deceased.

http://media.nbcbayarea.com/documents/HeidiFlori.pdf

Thanks for posting that; horrific as it is I believe that all the media outlets misreporting this case should be made to print/broadcast that document in full. Not only does it make it clear that what is happening to the body, it also makes it clear that medical staff treated it with respect. I cannot imagine how they must've felt having to do manicures/hair dressing/bed care under those circumstances.

 

[Karmady]

Thank you- right back at everyone here too.

Personally, I have found this forum to be VERY intellectually stimulating. I consider my standards high too . It's refreshing to have so many well written and thoughtful posts in one place!

Agree. The comments from the medical professionals and the links provided, in particular, have been extremely educational. jmo

 

[Elley Mae]

Thanks for posting that; horrific as it is I believe that all the media outlets misreporting this case should be made to print/broadcast that document in full. Not only does it make it clear that what is happening to the body, it also makes it clear that medical staff treated it with respect. I cannot imagine how they must've felt having to do manicures/hair dressing/bed care under those circumstances.

The people, (medical staff) that tended to her have my utmost respect and sympathy. I would not have done it, that's just me.

 

[Zuri]

Thank you, Zuri. Jahi is dead. She's in heaven. There is no need to advocate for her anymore. I'm sorry you feel the family is no longer worthy of empathy. I don't have that opinion.

I'm just super sensitive to people in the throes of grief. There's nothing worse.
My feelings on this issue and whether or not this family should be "forced" to accept would be different if Jahi was suffering. She is not. Her family is.

They brought their baby in for a routine operation. She was scared. Thy assured her. They were wrong and she suddenly died. That is an incredible trauma to bear. Yet now they are expected to accept what the medical establishment is telling them. And people are actually criticizing their shock by saying, "Well, complications are expected in every operation." as if they had no right to be shocked. Come on.

I believe this was not handled by the hospital as best as it could've been. I greatly admire health care professionals for the most part. But not all are heroes.

Gitana, I have been in their shoes. I have empathy and sympathy for any parent going through life or death decisions. Do I think CHO could probably have handled this case better? Yes, but I don't know that they didn't. My heart broke for NW when I saw the raw video of her speaking with the media sans attorney. She was living every mother's worst nightmare and I sensed she was living with an extreme amount of disbelief, grief and denial.

Something changed. Somewhere along the line I felt as though my heart strings were not just being pulled, but manipulated. If I hadn't seen this type of manipulation before, been a "victim" of manipulation in my job in the ER, I would not have recognized it as such.

I am not a hard hearted person. I respected her inability to let go. Where I drew the line was the constant bashing of CHO nurses and doctors, the deception, the trash talking, the denigration of the very people who were really trying to make a difference in the lives of sick children and their families. I have been on that receiving end, most notably being called a "chalk faced *advertiser censored*" by an AA 30 year old woman having chest pain from cocaine. I was so shocked at this comment, I told my nurse manager that the patient needed a different nurse. I went into the break room and cried. I was trying to help her and because I asked her to change into a gown, that is what I was called. Do you really think the treatment of the nurses in the PICU were treated any differently by this family? I don't. Yes, my POV. Just seen it too many times. Thank you for all you post here. I appreciate your kindness and thoughtfulness. IMO

 

[Isabelle]

It might be interpreted as evidence that CHO refusing to allow feeding damaged her intestines.

I am sure there would be more than one expert who can explain the physiology changes that occur before, during and after cardiac arrest.

 

[dh109977]

What about rigor mortis? When does that set in or will it not because of the ventilator?

 

[PoirotryInMotion]

I'm so sorry That's a lot of family tragedy to go through in such a short time. Thank you for your post, I understand it wasn't easy to share.

Thanks for this virtual hug, Kaliste. :blowkiss: