Family wants to keep life support for girl brain dead after tonsil surgery #1

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  • #1,181
It's not believable to me because I know all hospitals have a list of facilities that transfer patients on vents. There aren't that many. No need for a family to make blind calls. That's simply not believable to me.


Desperation will make you do all kinds of things that may seem unbelievable or impossible to others.


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  • #1,182
Desperation will make you do all kinds of things that may seem unbelievable or impossible to others.


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Sorry but it's not realistic. Nursing homes are not being cold-called to see if they take patients on ventilators. That's a tad over the top in drama, imo.
 
  • #1,183
We will not know until tomorrow, Monday, if the family's lawyer files in Federal court.

I hope he doesn't, but I think there's a good chance he will, based on what he's said to the press.

~jmo~
 
  • #1,184
It's not believable to me because I know all hospitals have a list of facilities that transfer patients on vents. There aren't that many. No need for a family to make blind calls. That's simply not believable to me.

While it has been nearly 20 years, my brother was in a coma for almost 3 months...they didn't know if he'd wake, or what the damage would be when he did. The hospital (and they were wonderful) literally told my mom on a Wednesday "We'll be releasing him on Friday" There's nothing we can do for him in our facility. She was shocked, he was on a vent, had a trachea, had a feeding tube..we didn't know what to do. We certainly did make blind calls to find a skilled nursing facility that would accept and work with someone in a coma, that would work with us as we worked to bring him out of his coma. We didn't want him warehoused.

I have so much empathy for this family. They do have faith in a God they believe can perform miracles, who did raise people from the dead...I feel a different empathy for the siblings. We were all adults, but even though my brother woke up and is a vital part of our family, he has lived with a traumatic brain injury and been disabled for close to 20 years. It's not the movie fairly tale ending of a coma wake up! I think a part of us all died in March of 1994 and it's been a very long process. At the same time, the world didn't stop for the rest of the family and friends (except perhaps my mom)...the grandmom and mom need a chance for the world to start spinning again and know in their heart that she's gone. For them to get past it, they will need to be able to let go on their terms, not on the terms of the people that in their mind (right or wrong) are responsible for it. I will never be reasonable about the guy that was with my brother and his reaction and how he possibly made things worse, I will forever be grateful for the nurse that was behind him and saw him go off the side of the mountain and rendered first aid. There's not always a way to be rational even when we know we would suggest it for someone else. That's part of family unconditional love.

I think time is all that can heal this and they can let her go....
 
  • #1,185
BBM This is one thing I kept wondering about. I had a surgery this summer where I was intubated. It wasn't for tonsils so I did not have the throat trauma but I was in recovery until I had some toast and a Pepsi, then I could go home.

Jahi was in the recovery and then taken to ICU, why wasn't she taken directly to ICU? In recovery, there is not someone there at every moment where there is in ICU. Also, when she started bleeding, why wasn't she attended to by a doctor right then or taken to ICU or back to an OR?

BBM. Every hospital does things a little differently. I have worked in hospitals that sent planned ICU admits directly from the OR to the ICU, and I have worked at hospitals where all ICU-bound patients spent time in Phase I recovery. The sicker, intubated PACU patients do indeed have 1:1 care-- sometimes 2 nurses and CRNA's and Anestheisologists as well.

Some states have mandated ratios on their nursing units, others don't. Some hospitals have mandated ratios; others schedule 1:1 or 1:2 in ICU's based on census and patient complexity.

As I look back on several pages here, there is an urge for some posters to say "this and such thing always happen this way", and then give a personal anecdote. Another example given is that complex throat surgery patients "should" always have a pre-emptory tracheostomy-- which is far from what the literature recommends, nor is it commonplace. Or the example that certain organ systems "always" fail in a certain order, because of a personal experience with a loved one. There is a fair amount of misinformation flying about on these pages.

I am also personally very offended at the suggestion that the surgical team would willy-nilly just "add on" elective procedures as they go, just because they "felt" like they were necessary, and not obtain informed consent ahead of time. Or that the surgery was somehow "unnecessary" and the family was "duped" into going thru with it.

I am personally very offended at the suggestion that highly educated and experienced ICU nurses are just scatterbrained dimwits who don't know what surgical procedures their patient has had, and whether or not they have sutures or can be fed a popsicle. Nothing could be further from the truth.

I really don't understand the animosity toward these hard working, highly educated, and experienced professionals AS A GROUP. Dear god, nobody, but NOBODY, wanted that little girl to be okay more than her surgical, postop, and ICU team-- except her family. Health care professionals DREAD complications with children-- I have NEVER met a careless or complacent professional involved with the surgical care of children. I am just so deeply offended at the suggestion that we are all idiots haphazardly slinking our way thru thru cases, withholding vital information from families, making mistakes right and left, and just waiting for our lunch break or something. Walk a mile in OUR shoes, please.

This family is heartbroken, angry, and extremely adversarial, in addition to their voluntary denial. I am not at all sure I believe that their perceptions and account of a number of things is accurate. There are so many things that are red flags, and so many inaccuracies in what they have told the reporters, that I can't believe them without much more information to validate their version of the truth.

I understand they are angry in particular with Dr. Durand, the chief of pediatrics. I believe their actions with regard to recruiting social media harassment for this man are highly unethical, deplorable, and potentially illegal. I believe the "march on the hospital" was a tremendously selfish, ill conceived, insensitive, and worthless maneuver. Apparently they are not unhappy with ANY other member of the surgical team, or the postop and ICU team, as they have not mentioned ANY of these other professionals by name.

The hard truth is that Durand, as Chief of Pedes, was most likely called in to try to get thru to this family in extreme denial, after a hoard of other docs and social work professionals tried. They were most likely already very upset before Durand ever spoke with them. The situation escalated until the only one left to try to get thru to them was the Chief. He took the fall for his entire hospital team, and stepped up to work with this family. I have no doubt that they perceive him as abrasive and rude-- his job was to tell them their precious child was dead following an elective procedure. That is the most awful news any family could receive.

I have compassion for this family, for the horrible death of their daughter. But I have little approval for the way they have chosen to conduct themselves in the awful aftermath. They have made the situation, IMO, much, much worse that it ever was, for themselves, and everyone else. And IMO, they have tremendously exploited their precious daughter in the process.

If they truly believe she is alive and should be cared for, they need to take her home and take responsibility for her care, instead of blaming everyone else for not taking her body in transfer. That is the easiest and quickest path to getting her body out of the hospital with the heart still beating, which is their stated goal. And it could happen before 5 pm tomorrow, and be within the $20K budget from their fundraising. At this point, CHO might even give them the ventilator if they asked for it. They would have complete control over her care if they take her home, and their community of supporters would step up to help. They can't force so many other people to do what they want, just because they want certain things to happen. The child is legally dead, and no facility or doc will take responsibility to do what the family wants. So the only answer left is to either let her go and remove the vent, or take her home and take responsibility for her care. JMO, IMO, etc.
 
  • #1,186
I see someone has posted in the general comments section of the FB page that they have a relative that has a facility in NY that is talking with the family. It appears it's a outpatient TBI rehab. I don't know if this is the facility the family has spoke about or not.

Rumor only since it's a FB post.
 
  • #1,187
BBM. Every hospital does things a little differently. I have worked in hospitals that sent planned ICU admits directly from the OR to the ICU, and I have worked at hospitals where all ICU-bound patients spent time in Phase I recovery. The sicker, intubated PACU patients do indeed have 1:1 care-- sometimes 2 nurses and CRNA's and Anestheisologists as well.

Some states have mandated ratios on their nursing units, others don't. Some hospitals have mandated ratios; others schedule 1:1 or 1:2 in ICU's based on census and patient complexity.

As I look back on several pages here, there is an urge for some posters to say "this and such thing always happen this way", and then give a personal anecdote. Another example given is that complex throat surgery patients "should" always have a pre-emptory tracheostomy-- which is far from what the literature recommends, nor is it commonplace. Or the example that certain organ systems "always" fail in a certain order, because of a personal experience with a loved one. There is a fair amount of misinformation flying about on these pages.

I am also personally very offended at the suggestion that the surgical team would willy-nilly just "add on" elective procedures as they go, just because they "felt" like they were necessary, and not obtain informed consent ahead of time. Or that the surgery was somehow "unnecessary" and the family was "duped" into going thru with it.

I am personally very offended at the suggestion that highly educated and experienced ICU nurses are just scatterbrained dimwits who don't know what surgical procedures their patient has had, and whether or not they have sutures or can be fed a popsicle. Nothing could be further from the truth.

I really don't understand the animosity toward these hard working, highly educated, and experienced professionals AS A GROUP. Dear god, nobody, but NOBODY, wanted that little girl to be okay more than her surgical, postop, and ICU team-- except her family. Health care professionals DREAD complications with children-- I have NEVER met a careless or complacent professional involved with the surgical care of children. I am just so deeply offended at the suggestion that we are all idiots haphazardly slinking our way thru thru cases, withholding vital information from families, making mistakes right and left, and just waiting for our lunch break or something. Walk a mile in OUR shoes, please.

This family is heartbroken, angry, and extremely adversarial, in addition to their voluntary denial. I am not at all sure I believe that their perceptions and account of a number of things is accurate. There are so many things that are red flags, and so many inaccuracies in what they have told the reporters, that I can't believe them without much more information to validate their version of the truth.

I understand they are angry in particular with Dr. Durand, the chief of pediatrics. I believe their actions with regard to recruiting social media harassment for this man are highly unethical, deplorable, and potentially illegal. I believe the "march on the hospital" was a tremendously selfish, ill conceived, insensitive, and worthless maneuver. Apparently they are not unhappy with ANY other member of the surgical team, or the postop and ICU team, as they have not mentioned ANY of these other professionals by name.

The hard truth is that Durand, as Chief of Pedes, was most likely called in to try to get thru to this family in extreme denial, after a hoard of other docs and social work professionals tried. They were most likely already very upset before Durand ever spoke with them. The situation escalated until the only one left to try to get thru to them was the Chief. He took the fall for his entire hospital team, and stepped up to work with this family. I have no doubt that they perceive him as abrasive and rude-- his job was to tell them their precious child was dead following an elective procedure. That is the most awful news any family could receive.

I have compassion for this family, for the horrible death of their daughter. But I have little approval for the way they have chosen to conduct themselves in the awful aftermath. They have made the situation, IMO, much, much worse that it ever was, for themselves, and everyone else. And IMO, they have tremendously exploited their precious daughter in the process.

If they truly believe she is alive and should be cared for, they need to take her home and take responsibility for her care, instead of blaming everyone else for not taking her body in transfer. That is the easiest and quickest path to getting her body out of the hospital with the heart still beating, which is their stated goal. And it could happen before 5 pm tomorrow, and be within the $20K budget from their fundraising. At this point, CHO might even give them the ventilator if they asked for it. They would have complete control over her care if they take her home, and their community of supporters would step up to help. They can't force so many other people to do what they want, just because they want certain things to happen. The child is legally dead, and no facility or doc will take responsibility to do what the family wants. So the only answer left is to either let her go and remove the vent, or take her home and take responsibility for her care. JMO, IMO, etc.

After recently going through cancer treatment, I have a lot of respect for those who work in hospitals caring for patients. I received nothing but kindness from nurses, support staff, the tomo team, the chemo team and the doctors.

I didn't realize that they could take her directly home, I thought it had to be a facility. As I said in a post yesterday, I think my experience has made me emotional about the loss of a life.
 
  • #1,188
BBM. Every hospital does things a little differently. I have worked in hospitals that sent planned ICU admits directly from the OR to the ICU, and I have worked at hospitals where all ICU-bound patients spent time in Phase I recovery. The sicker, intubated PACU patients do indeed have 1:1 care-- sometimes 2 nurses and CRNA's and Anestheisologists as well.

Some states have mandated ratios on their nursing units, others don't. Some hospitals have mandated ratios; others schedule 1:1 or 1:2 in ICU's based on census and patient complexity.

As I look back on several pages here, there is an urge for some posters to say "this and such thing always happen this way", and then give a personal anecdote. Another example given is that complex throat surgery patients "should" always have a pre-emptory tracheostomy-- which is far from what the literature recommends, nor is it commonplace. Or the example that certain organ systems "always" fail in a certain order, because of a personal experience with a loved one. There is a fair amount of misinformation flying about on these pages.

I am also personally very offended at the suggestion that the surgical team would willy-nilly just "add on" elective procedures as they go, just because they "felt" like they were necessary, and not obtain informed consent ahead of time. Or that the surgery was somehow "unnecessary" and the family was "duped" into going thru with it.

I am personally very offended at the suggestion that highly educated and experienced ICU nurses are just scatterbrained dimwits who don't know what surgical procedures their patient has had, and whether or not they have sutures or can be fed a popsicle. Nothing could be further from the truth.

I really don't understand the animosity toward these hard working, highly educated, and experienced professionals AS A GROUP. Dear god, nobody, but NOBODY, wanted that little girl to be okay more than her surgical, postop, and ICU team-- except her family. Health care professionals DREAD complications with children-- I have NEVER met a careless or complacent professional involved with the surgical care of children. I am just so deeply offended at the suggestion that we are all idiots haphazardly slinking our way thru thru cases, withholding vital information from families, making mistakes right and left, and just waiting for our lunch break or something. Walk a mile in OUR shoes, please.

This family is heartbroken, angry, and extremely adversarial, in addition to their voluntary denial. I am not at all sure I believe that their perceptions and account of a number of things is accurate. There are so many things that are red flags, and so many inaccuracies in what they have told the reporters, that I can't believe them without much more information to validate their version of the truth.

I understand they are angry in particular with Dr. Durand, the chief of pediatrics. I believe their actions with regard to recruiting social media harassment for this man are highly unethical, deplorable, and potentially illegal. I believe the "march on the hospital" was a tremendously selfish, ill conceived, insensitive, and worthless maneuver. Apparently they are not unhappy with ANY other member of the surgical team, or the postop and ICU team, as they have not mentioned ANY of these other professionals by name.

The hard truth is that Durand, as Chief of Pedes, was most likely called in to try to get thru to this family in extreme denial, after a hoard of other docs and social work professionals tried. They were most likely already very upset before Durand ever spoke with them. The situation escalated until the only one left to try to get thru to them was the Chief. He took the fall for his entire hospital team, and stepped up to work with this family. I have no doubt that they perceive him as abrasive and rude-- his job was to tell them their precious child was dead following an elective procedure. That is the most awful news any family could receive.

I have compassion for this family, for the horrible death of their daughter. But I have little approval for the way they have chosen to conduct themselves in the awful aftermath. They have made the situation, IMO, much, much worse that it ever was, for themselves, and everyone else. And IMO, they have tremendously exploited their precious daughter in the process.

If they truly believe she is alive and should be cared for, they need to take her home and take responsibility for her care, instead of blaming everyone else for not taking her body in transfer. That is the easiest and quickest path to getting her body out of the hospital with the heart still beating, which is their stated goal. And it could happen before 5 pm tomorrow, and be within the $20K budget from their fundraising. At this point, CHO might even give them the ventilator if they asked for it. They would have complete control over her care if they take her home, and their community of supporters would step up to help. They can't force so many other people to do what they want, just because they want certain things to happen. The child is legally dead, and no facility or doc will take responsibility to do what the family wants. So the only answer left is to either let her go and remove the vent, or take her home and take responsibility for her care. JMO, IMO, etc.

Excellent post!!! I agree with everything you said and I don't understand why they haven't worked from the beginning on taking her home.
 
  • #1,189
I think the family needs to start accepting it and realize that if they have not found a facility to accept Jahi and if their appeals are denied (which I feel they will be), the it must be God's will that he has called Jahi home. They have prayed for a miracle and asked for time for a miracle to occur and it is not happening. It is now time that they must accept it ,come to terms with it and take comfort that Jahi is now in a place beyond suffering.

I would hope that their church leaders have started to prepare them for this being all part of God's plan and God's will. I am thinking that the "fundraiser" that the church was going to have was called off because even the clergy know that there is no hope for Jahi and it is not helpful to help the family continue to live in a bubble of denial.
 
  • #1,190
I would also like to add that from my perspective, this discussion has been respectful, informative, educational, and heartfelt...despite widely differing opinions. I haven't gone back to see which posts were edited or removed, but anyway...



This is a highly emotionally-charged issue for obvious reasons that needn't be enumerated.



I'm thankful that on this discussion, I've been able to post my own takes, even though I did so rarely.



Peace!



~jmo~


I agree! I feel like I've learned so much from so many in the past few days. I really appreciate all of the knowledge brought in by our very own medical experts and those who unfortunately have gained their knowledge through personal tragedy.

I just can't tear myself away from this thread.
 
  • #1,191
According to court documents, the family is refusing to accept it because they don't believe it because of their faith.

Of course there could be a general distrust of medicine but distrust may also involve a lot of factors having nothing to do with religion. The grandmother apparently is a surgical nurse so it might have more to do with her own experiences.

I think it may be more of a distrust in this hospital and staff vs. a lack of trust in the medical profession.
In the mind of the family they are in this situation due to a botched procedure or improper care after the procedure.
I'm betting that the more postive aspects of the surgery were played up and less was said of the potential risks.
Any trust they had is gone and that may be why they are having such a hard time hearing what is being said about the current state of the child.
Lack of trust and fear of not being given time to deal with the situation may be why the family went public with their story.
IMO they should let go....but in an ideal world it would be a choice made by family and not a doctor or because of a law.
IMO
 
  • #1,192
<respectfully snipped>

If they truly believe she is alive and should be cared for, they need to take her home and take responsibility for her care, instead of blaming everyone else for not taking her body in transfer. That is the easiest and quickest path to getting her body out of the hospital with the heart still beating, which is their stated goal. And it could happen before 5 pm tomorrow, and be within the $20K budget from their fundraising. At this point, CHO might even give them the ventilator if they asked for it. They would have complete control over her care if they take her home, and their community of supporters would step up to help. They can't force so many other people to do what they want, just because they want certain things to happen. The child is legally dead, and no facility or doc will take responsibility to do what the family wants. So the only answer left is to either let her go and remove the vent, or take her home and take responsibility for her care. JMO, IMO, etc.

Thank you for setting the record straight!

I like the idea of her going home, and putting an end to blaming the hospital after the child passed away ... a known risk. There does appear to be an inability, or unwillingness, to cope with the bad news, and in the process, the patient appears to be somewhat exploited.

Let her go home. $20k might pay for the hospital bed. I wonder if the siblings have been told that there is no hope of recovery.
 
  • #1,193
I appreciate the Mother's early update today, Sunday. I was online at my time PST when she posted it.

Once her Goal had been met, many hours ago, why no updates since?

Yes, I can imagine she is busy and involved with several other matters, not the least of which is her immense grief. Still, I am perplexed why a fund that has garnered well over its limit of $20k has not been tended to (nearing $22k as of this writing, and still going).

I doubt any of the donors would take-back their gifts, even if they realize that the fund's original purpose was changed...and even if any of them has now read more on the net and comprehended what Brain Death means.

I would have given something to the family, if I knew it would aid in their grief and and acceptance. Had a fund been setup for an intervention with specialists trained in grief counseling and education of the medical facts, I would have been first in line.

All said, I have stated many times over past days to my friends in RL or on IRC that I would donate to CHO. Off to do that now!

So hoping for a quiet resolution to this case which truly should not have even had to happen. As much as I'd like to learn the hospital's side, I would rather Jahi's family accepts her DX from 12/13 and lets their precious girl go, with nothing further in the court system. Yep, I can still dream.

~jmo~
 
  • #1,194
I think it may be more of a distrust in this hospital and staff vs. a lack of trust in the medical profession.
In the mind of the family they are in this situation due to a botched procedure or improper care after the procedure.
I'm betting that the more postive aspects of the surgery were played up and less was said of the potential risks.
Any trust they had is gone and that may be why they are having such a hard time hearing what is being said about the current state of the child.
Lack of trust and fear of not being given time to deal with the situation may be why the family went public with their story.
IMO they should let go....but in an ideal world it would be a choice made by family and not a doctor or because of a law.
IMO

This reminds me of what we see during criminal trials. Take Casey Anthony's mother, for example. She went to the media, Nancy Grace first, and got her story out there to gain public support. In other trials, we see a deep distrust of the judicial system. In this case we see both a deep distrust of either the medical community or this hospital, and we see that the story was taken to the media to gain public support. The problem is that the more we hear, the more we realize that the story that was first presented was not exactly the whole story. That's what we saw in the Anthony case as well. Time unfolded more information that, if known at the outset, would have resulted in the story being a non-story. Did the Anthonys set up a fund early on, or did they confine their fund raising to the sale of photos?
 
  • #1,195
with all due respect, I don't believe the instructions mean the child should be handed a popsicle in the recovery room.
I have no experience with tonsillectomies but my husband and I have had several out patient procedures over the years. I am pretty sure that at all of them, we were given food to eat in the recovery room; we were usually hungry because we hadn't eaten since the night before. But I also recall the nurse telling me that they wanted to make sure that I could eat something before I was discharged. Imwasmconstantly monitor for various signs and symptoms; I remember them being very insistent that I pee, because they wanted to make sure my kidneys were not affected by the anesthesia.

I would guess that they would want something similar for a tonsillectomy, but solid food would not be an option.


I remember the nurses being very attentive and am surprised to read that the nurses at this hospital were not attentive to Jahi. I had one nurse specifically assigned to me but the recovery area was very active and there was lots of staff around, who I assume would help out with another patient in a crisis.

Colonoscopies have become even scarier for me now.
 
  • #1,196
BBM. Every hospital does things a little differently. I have worked in hospitals that sent planned ICU admits directly from the OR to the ICU, and I have worked at hospitals where all ICU-bound patients spent time in Phase I recovery. The sicker, intubated PACU patients do indeed have 1:1 care-- sometimes 2 nurses and CRNA's and Anestheisologists as well.


As I look back on several pages here, there is an urge for some posters to say "this and such thing always happen this way", and then give a personal anecdote. Another example given is that complex throat surgery patients "should" always have a pre-emptory tracheostomy-- which is far from what the literature recommends, nor is it commonplace.

Respectfully snipped for space.
I agree with you 100%
I just would like to mention a few things.
The recovery rooms I worked in had a special room where the patients that were headed to ICU were watched for a period of time before being transferred upstairs to ICU. I don't know what the rules were but IIRC there were 3 people in charge of overseeing these patients. 2 RNs and an RT I believe.
In my defense-
I only stated that back when I was in nursing school 1987, no otolarygologist would perform that many surgeries on an obese patient's upper airway at the same time without them consenting to having a trach placed for a protected, patent. airway in the event of severe swelling or bleeding.

* it was horrific for the patients as I am sure you know about "new" trachs.
Really the only reason it came to mind was when I read about possible "suctioning" being used.

That was a long time ago.
Maybe it was a hospital policy back then or perhaps the Drs decided that was the "rule".
Every one of the patients I treated regretted having it all done at once and comminicated that often. They were in absolute panic mode with all the suctioning that had to be done on them.
As a student it was scary to watch.

It is good to know that it isn't the standard now.
Like you said every hospital is.different.
I hope you do not feel like I am a dingbat for stating that as it was only my opinion. ;)

Bottom line Jahi and the memory of her life is all that really matters.
I am praying that the family gets the comfort and direction
they need in the coming days.
Moo



Since we really do not know the hospitals take I in no way am blaming anyone!

Sent from my SGH-T679 using Tapatalk 2
 
  • #1,197
BBM. Every hospital does things a little differently. I have worked in hospitals that sent planned ICU admits directly from the OR to the ICU, and I have worked at hospitals where all ICU-bound patients spent time in Phase I recovery. The sicker, intubated PACU patients do indeed have 1:1 care-- sometimes 2 nurses and CRNA's and Anestheisologists as well.

Some states have mandated ratios on their nursing units, others don't. Some hospitals have mandated ratios; others schedule 1:1 or 1:2 in ICU's based on census and patient complexity.

As I look back on several pages here, there is an urge for some posters to say "this and such thing always happen this way", and then give a personal anecdote. Another example given is that complex throat surgery patients "should" always have a pre-emptory tracheostomy-- which is far from what the literature recommends, nor is it commonplace. Or the example that certain organ systems "always" fail in a certain order, because of a personal experience with a loved one. There is a fair amount of misinformation flying about on these pages.

I am also personally very offended at the suggestion that the surgical team would willy-nilly just "add on" elective procedures as they go, just because they "felt" like they were necessary, and not obtain informed consent ahead of time. Or that the surgery was somehow "unnecessary" and the family was "duped" into going thru with it.

I am personally very offended at the suggestion that highly educated and experienced ICU nurses are just scatterbrained dimwits who don't know what surgical procedures their patient has had, and whether or not they have sutures or can be fed a popsicle. Nothing could be further from the truth.

I really don't understand the animosity toward these hard working, highly educated, and experienced professionals AS A GROUP. Dear god, nobody, but NOBODY, wanted that little girl to be okay more than her surgical, postop, and ICU team-- except her family. Health care professionals DREAD complications with children-- I have NEVER met a careless or complacent professional involved with the surgical care of children. I am just so deeply offended at the suggestion that we are all idiots haphazardly slinking our way thru thru cases, withholding vital information from families, making mistakes right and left, and just waiting for our lunch break or something. Walk a mile in OUR shoes, please.

This family is heartbroken, angry, and extremely adversarial, in addition to their voluntary denial. I am not at all sure I believe that their perceptions and account of a number of things is accurate. There are so many things that are red flags, and so many inaccuracies in what they have told the reporters, that I can't believe them without much more information to validate their version of the truth.

I understand they are angry in particular with Dr. Durand, the chief of pediatrics. I believe their actions with regard to recruiting social media harassment for this man are highly unethical, deplorable, and potentially illegal. I believe the "march on the hospital" was a tremendously selfish, ill conceived, insensitive, and worthless maneuver. Apparently they are not unhappy with ANY other member of the surgical team, or the postop and ICU team, as they have not mentioned ANY of these other professionals by name.

The hard truth is that Durand, as Chief of Pedes, was most likely called in to try to get thru to this family in extreme denial, after a hoard of other docs and social work professionals tried. They were most likely already very upset before Durand ever spoke with them. The situation escalated until the only one left to try to get thru to them was the Chief. He took the fall for his entire hospital team, and stepped up to work with this family. I have no doubt that they perceive him as abrasive and rude-- his job was to tell them their precious child was dead following an elective procedure. That is the most awful news any family could receive.

I have compassion for this family, for the horrible death of their daughter. But I have little approval for the way they have chosen to conduct themselves in the awful aftermath. They have made the situation, IMO, much, much worse that it ever was, for themselves, and everyone else. And IMO, they have tremendously exploited their precious daughter in the process.

If they truly believe she is alive and should be cared for, they need to take her home and take responsibility for her care, instead of blaming everyone else for not taking her body in transfer. That is the easiest and quickest path to getting her body out of the hospital with the heart still beating, which is their stated goal. And it could happen before 5 pm tomorrow, and be within the $20K budget from their fundraising. At this point, CHO might even give them the ventilator if they asked for it. They would have complete control over her care if they take her home, and their community of supporters would step up to help. They can't force so many other people to do what they want, just because they want certain things to happen. The child is legally dead, and no facility or doc will take responsibility to do what the family wants. So the only answer left is to either let her go and remove the vent, or take her home and take responsibility for her care. JMO, IMO, etc.

I had to copy it also. :) Thank you for a wonderful post. Thank you for your eloquence where I only had lots of tears at the memories of taking care of patients much like Jahi for weeks at the time as an ICU RN.

I "retired" from nursing a few years ago because the repetitive stress injuries were piling up. Plus, I had done everything I wanted to do and seen more than I ever thought a person could see.. You know what I mean. I really do understand the stress from all sides- the hospital admin., the nursing and resp. therapy staff caring for Jahi right now, the attorneys, and the family.

The family caring for Jahi with an ETT is a stop- gap measure but it's probably the best option for them, if they don't call 911 for an ambulance when the ventilator alarms or the ETT is dislodged as we both know it will be if her heart doesn't stop first....
 
  • #1,198
. I have no experience with tonsillectomies but my husband and I have had several out patient procedures over the years. I am pretty sure that at all of them, we were given food to eat in the recovery room; we were usually hungry because we hadn't eaten since the night before. But I also recall the nurse telling me that they wanted to make sure that I could eat something before I was discharged. I remember the nurses being very attentive and am surprised to read that the nurses at this hospital were not attentive to Jahi. I had one nurse specifically assigned to me but the recovery area was very active and there was lots of staff around, who I assume would help out with another patient in a crisis.

Colonoscopies have become even scarier for me now.

I think it depends on the recovery room. My son had neurosurgery, and the surgeon found me to tell me how it went. I was not allowed to see my son for a while because he was in recovery. He was not eating popsicles, and he wasn't an out-patient, but he was recovering from the surgery and anaesthetic. Within the hour, they found me and took me to see him in ICU, but he was not to be disturbed. The two nurses that were assigned to him explained what was going on, and what to watch for ... like potassium levels. If the reading was at a certain low number, I should keep an eye on it, and if it dropped again and no one noticed, I should report it.

My son's medical chart was a thick binder. I would imagine that this case also has a full binder of medical history. Other than routine knee surgery, my medical history fits on half a sheet of paper.
 
  • #1,199
I wanted to recommend this book to any interested about the issues and difficulty with breaking bad news to families. I served on a death notification team while I was in the military, and this book was recommended to me by my supervisor. I have found it to be a very useful reference, very thoughtful and respectful.

Grave Words: Notifying Survivors about Sudden, Unexpected Deaths

Amazon.com: Grave Words: Notifying Survivors about Sudden, Unexpected Deaths eBook: Kenneth V Iserson MD: Kindle Store
 
  • #1,200
Thank you for setting the record straight!

I like the idea of her going home, and putting an end to blaming the hospital after the child passed away ... a known risk. There does appear to be an inability, or unwillingness, to cope with the bad news, and in the process, the patient appears to be somewhat exploited.

Let her go home. $20k might pay for the hospital bed. I wonder if the siblings have been told that there is no hope of recovery.

Realistically, that 20k is not going to last very long for 24/7 assistance. There is no way that a working mom (even with FMLA) is going to be able to provide 24/7 care to an (at the least) comatose status daughter. It's far more than her lying there with a breathing machine.

ETA, insurance will probably not cover some things in home like they would in a facility.
 
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