Family wants to keep life support for girl brain dead after tonsil surgery #4

[Zuri]

I wanted to share this story with you about the lengths required to keep a child who is vent dependent at home.

In 2008, a nurse I worked with in the PACU, D, had a 4th of July party at her home in PA. Her then 5 year old son, M, was driving around on one of those motorized kid jeeps in their driveway. Under the watchful eyes of his mom and others, He drove his little jeep under a raised pick up truck. Mom became concerned when her son did not reverse and come back out. She went over to her son to get him out of being stuck and realized he was blue and not breathing. She yelled for help and got her son on the ground and began CPR. He was flown to AI duPont Children's Hospital and subsequent studies showed he had fractured his C2 vertebra. He was a quadriplegic and vent dependent at 5 years old.

We raised money within our hospital to help with the expenses for bringing M home. They had to enlarge a room, create bigger doorways to accommodate a motorized wheelchair, a ramp to their front door, buy a van with a wheelchair lift etc. M required 24/7 nursing care. He could shrug slightly and required a head attachment pointer to a computer so he could communicate. He could be off the vent for less than a minute and sometimes his mom could plug his trach to let him get a short sentence out.

The state of Pennsylvania has assisted in his medical care expenses as the costs are astronomical. Accommodations were made at his elementary school and a nurse has to go to school with him and sit through class. He is unable to actively participate in class, but it has been important to D that he try to be as mentally stimulated as possible. M has an older brother who has kind of gotten lost in all of this. D and her husband try to do things with him individually, but all semblance of a previously normal family life has been forever changed. D has taken M to Children's Hospital of Philadelphia for numerous second opinions which have only concurred with AI's. D quit her job so she could take care of M, when not in school. Her life is now filled with the sound of a vent and alarms going off. Shortly before she quit, she broke down and said she wished sometimes that M could have gone to heaven and not survived. She said her life was so hard now, worried about finances, her other son, M and her marriage. The strain of M's accident and subsequent condition has affected them all, not in a positive way.

I have no idea how M is doing now. Jahi's case has reminded me somewhat of M and D. I don't think NW has any idea of the longer range ramifications of the decisions she is making now. Neither did D at the time, and D had the benefit of medical knowledge and comprehension of what physicians were telling her. If NW is successful in taking Jahi home, it is my hope that there will be a huge support system for that family, especially the other children, and as time goes on they will still be present. Presently, Jahi is being cared for by experienced and skilled nurses in a setting that has all the equipment needed within an arm's length. Should Jahi go home, I hope the family is prepared for come what may. JMO.

Thanks for letting me share this lengthy story.

 

[Donjeta]

It's "funny" that even though his ethics are, um, questionable, Lifesite News are ready to hug him because he agrees with them.
http://www.lifesitenews.com/mobile/news/what-is-jahi-mcmaths-hospital-trying-to-hide

One of the other groups assisting Jahi’s family is the International Brain Research Foundation in New York. This organization performs cutting-edge research in brain health, including cures for brain injury. I believe the time has come to challenge the definition of “brain dead.” The terminology was developed over 50 years ago and there’s significant debate regarding the criteria. The Foundation CEO, Dr. Phil Defina, agrees. He’s even called it “outdated” and “archaic.” Further, he asks a poignant question, “Why do we want to jump ahead and pull the plug on this 13-year-old girl who may have a chance to recover? You want to err on the side of caution and not take away a life. What Jahi needs is more time.”

The argument doesn't even make too much sense. Sure, brain scanning technology has advanced since the 1960s but I really don't believe that Jahi was tested using equipment that was 50 years old. And the brain stem reflexes that they're testing are a pretty archaic system.

 

[Isabelle]

Good question, BDE.

If a medically licensed person provides treatment to Jahi, say, at mom's apt/home, presumably, that person would be subject to ---
--st. bd. disciplinary procedures re license, i.e., letter of censure, suspension, termination, etc. AND
--crim prosecution re abuse of corpse.

If a non-medically licensed person provides treatment to Jahi, say, at mom's apt/home, presumably, that person would be subject to ---
--crim prosecution re abuse of corpse (if there is physical contact?) or
--wild tangent, crim pros for practice of medicine without a license? Can a person be prosecuted for that when practiced on a body declared dead and for which a D/Cert has been issued?

JM2cts and I may be wrong. :seeya:

If the court approves taking Jahi home they must understand she will need some type of care. If it is a crime to provide care to Jahi then caregivers at CHO would be guilty also.

 

[MaybeNotToday]

I wanted to share this story with you about the lengths required to keep a child who is vent dependent at home.

In 2008, a nurse I worked with in the PACU, D, had a 4th of July party at her home in PA. Her then 5 year old son, M, was driving around on one of those motorized kid jeeps in their driveway. Under the watchful eyes of his mom and others, He drove his little jeep under a raised pick up truck. Mom became concerned when her son did not reverse and come back out. She went over to her son to get him out of being stuck and realized he was blue and not breathing. She yelled for help and got her son on the ground and began CPR. He was flown to AI duPont Children's Hospital and subsequent studies showed he had fractured his C2 vertebra. He was a quadriplegic and vent dependent at 5 years old.

We raised money within our hospital to help with the expenses for bringing M home. They had to enlarge a room, create bigger doorways to accommodate a motorized wheelchair, a ramp to their front door, buy a van with a wheelchair lift etc. M required 24/7 nursing care. He could shrug slightly and required a head attachment pointer to a computer so he could communicate. He could be off the vent for less than a minute and sometimes his mom could plug his trach to let him get a short sentence out.

The state of Pennsylvania has assisted in his medical care expenses as the costs are astronomical. Accommodations were made at his elementary school and a nurse has to go to school with him and sit through class. He is unable to actively participate in class, but it has been important to D that he try to be as mentally stimulated as possible. M has an older brother who has kind of gotten lost in all of this. D and her husband try to do things with him individually, but all semblance of a previously normal family life has been forever changed. D has taken M to Children's Hospital of Philadelphia for numerous second opinions which have only concurred with AI's. D quit her job so she could take care of M, when not in school. Her life is now filled with the sound of a vent and alarms going off. Shortly before she quit, she broke down and said she wished sometimes that M could have gone to heaven and not survived. She said her life was so hard now, worried about finances, her other son, M and her marriage. The strain of M's accident and subsequent condition has affected them all, not in a positive way.

I have no idea how M is doing now. Jahi's case has reminded me somewhat of M and D. I don't think NW has any idea of the longer range ramifications of the decisions she is making now. Neither did D at the time, and D had the benefit of medical knowledge and comprehension of what physicians were telling her. If NW is successful in taking Jahi home, it is my hope that there will be a huge support system for that family, especially the other children, and as time goes on they will still be present. Presently, Jahi is being cared for by experienced and skilled nurses in a setting that has all the equipment needed within an arm's length. Should Jahi go home, I hope the family is prepared for come what may. JMO.

Thanks for letting me share this lengthy story.

Thank you for sharing that story. Bless that sweet baby's heart. I am tearing up. What a hard life to live for that family

 

[Herat]

It's "funny" that even though his ethics are, um, questionable, Lifesite News are ready to hug him because he agrees with them.
http://www.lifesitenews.com/mobile/news/what-is-jahi-mcmaths-hospital-trying-to-hide



The argument doesn't even make too much sense. Sure, brain scanning technology has advanced since the 1960s but I really don't believe that Jahi was tested using equipment that was 50 years old. And the brain stem reflexes that they're testing are a pretty archaic system.

His argument is not based on fact. It's based on the heartbreaking photo of a 13 year old pretty bubbly girl. He is only using emotion, not any objective data.

Fortunately, real healthcare professionals who deal with brain injury and all of it's sequelae, including brain death, do use objective criteria, whether on a pretty 13 year old or a more crusty 90 year old.

 

[BeginnersLuck]

It's "funny" that even though his ethics are, um, questionable, Lifesite News are ready to hug him because he agrees with them.
http://www.lifesitenews.com/mobile/news/what-is-jahi-mcmaths-hospital-trying-to-hide



The argument doesn't even make too much sense. Sure, brain scanning technology has advanced since the 1960s but I really don't believe that Jahi was tested using equipment that was 50 years old. And the brain stem reflexes that they're testing are a pretty archaic system.

Unfortunately, Lifesite news as well as other sites are ready to hug anyone that comments on this, regardless of credentials, reputation, facts and statements of top experts.

Scary how this kind of media spreads and influences people.

 

[SilkySifaka]

IMO, denial does not constitute being mentally ill. The hospital has offered pastoral care, grief counseling, and every other service they have in place. There is some responsibility incumbant on the mother to educate herself about Jahi's medical diagnosis and to seek mental health counseling on her own.

What made me incredibly sad in this post, was the feeling that one would " want an attorney at the bedside documenting everything with an eye to a lawsuit if they step away from the boundaries of good care". I would like to think that is incredibly unnecessary as most nurses and doctors are committed to doing what is best for their patients. As medical documentation already occurs as though an attorney would read it throughout this country in healthcare settings, having the equivalent of "Big Brother" standing over a provider is an incredibly sad thought. JMO, JMV

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

 

[Zuri]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

How do we know this to be accurate and true?

 

[iluvmua]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

We are ONLY getting the mother's side of the story.

She's already lied over and over and over etc.

Which is why I don't believe anything that comes out of her darn mouth.

JMo

 

[iluvmua]

How do we know this to be accurate and true?

We Don't and I have a problem with excepting everything the mother says as fact.

JMO

 

[K_Z]

Upthread, there was a link to California coroner statutes where there is a way that a family can claim the remains to other than a funeral home. I wonder if this is the paperwork he is talking about.

Of course, this will mean the mother probably has to sign off for her deceased daughter's "remains". Once she does that, I can't see how any licensed medical facility or licensed physician can perform the surgeries needed for the ventilator or G-tube. It would be against the law in all 50 states as abuse of a corpse.

I wonder if Dolan thinks a mortuary is going to be used to do these surgeries? They must have laws about this sort of stuff, too.

I think the hospital finally involving the coroner is the first stroke of sanity we've had in weeks. It makes perfect legal, and ethical sense for the hospital to release Jahi's body to the coroner FIRST, and not to the family, or another care facility. This is what happens with all deaths that must have coroner review. In limited circumstances, the coroner will allow families to remove the bodies of their loved ones, for purposes of religious or cultural rituals (where allowed by law), and to transport to other cities, in some instances.

By insisting that the coroner become involved and issue the preliminary death certificate, the family must now coordinate everything with the coroner's office, and not the hospital. It puts responsibility where it should be for decisions about the transportation and custody of the deceased, and it begins the process of establishing final disposition of what happens to Jahi's body.

I hope the family will work with the coroner to move her body wherever they would like it to go (their home, or another facility). But I reluctantly think that there will be another battle to remove the coroner from the process, so that the family does not have to "admit" they are agreeing that she is deceased. I think Dolan was hinting at that when he commented "if" the family completes the necessary paperwork with the coroner's office. Reluctantly, I think they will refuse. And the stalemate goes on. And on.

Sadly, CHO is probably furiously rewriting all of their policies about interaction with families of patients declared brain dead. Regrettably, I think their new policies will, of necessity, remove more opportunities to be lenient on timeframes for withdrawing support, and set stricter guidelines for families. It is the future families of brain dead children who will be more rushed in their crisis and acceptance of brain death, due to this situation playing out over so many weeks.

 

[otto]

No the hospitals job is not done, they have a duty of care to the family members they interacted with. A duty to get them the best help, the most caring and empathetic doctors to help them deal.

THey keep people on ventilators for organ removal. That mean they are dead or alive? they are doing surgery on the dead body. Which i fully agree with but i can see why the mom feels putting in a feeding tube is not much different morally.

It doesn't MATTER what the family is saying/doing in terms of the hospitals responsibility to treat patien AND families with care and empathy. So they got sweathshirts with Jahi's pic on them or called out the hospital. It is CLEAR imo that there is some mental illness going on that needs treatment and in fact the hospital should be moving heaven and earth to get the mom treatment, if not from them then from someone they can trust. NOT putting their backs up because a mom can understandably not believe her baby is dead. imop

In fact the hospitals current reaction to the family and refusing to call Jahi by name etc. would ensure that I picked up a lawyer on my way to the hospital for any care of a family member. If they are willing to lose all empathy for family in this case, what will they do with their duty of care ijn another case. I would want an attorney at bedside documenting everything with an eye to a lawsuit if they step away from the boundaries of good care.

The child, not her family, was the patient. Pastoral care was provided to her family after the patient died due to known complications. I'm sure we've all seen signs in medical facilities making it clear that abuse will not be tolerated. A family that brings a protesting mob to the hospital for the sole purpose of forcing a personal agenda is not exactly respectful, and there are obvious reasons why that would not be tolerated. If an adult is in need of mental health treatment, the Children's Hospital is the wrong place to go.

 

[Herat]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

An attorney is medically qualified to evaluate the patient and comment on their progress?

Since we have not had an autopsy, nor have we read the medical record, or read sworn testimony, any comments made are simply conjecture and speculation, not fact.

 

[K_Z]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

Respectfully, I completely disagree with this statement. What happened in the ICU is not YET up for discussion. We have NO IDEA if the staff did, or did not do what should have been done. In a perfect world, NO ONE would die following ANY elective surgery. But just because someone does have a complication, or die, is not "evidence" of improper care or incompetence. That is for a medical examiner and a malpractice suit to decide.

Right now, we have one family flatly denying the scientific and legal diagnosis of death, and claiming that it is their right to make this determination, and force others to do what they want, in defiance of laws, regulations, and widely accepted ethics. And IMO, that is troubling enough.

 

[iluvmua]

http://www.ktvu.com/news/news/local/agreement-reached-how-move-jahi-hospital/nccK5/

The family said as they move forward they will not disclose where or when they will be moving Jahi out of Children’s Hospital. They are asking for privacy in the very public battle over life and death.

Now they want privacy..........

 

[BeginnersLuck]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

With all due respect, we only have one side of the story that has been presented to the media. CHO is a highly accredited facility and the patient/nurse ratio in ICU, as well as other care is much higher than a regular room. Until I see that medical records say, that the reported events to the media are accurate, I have a very, very hard time believing that they didn't do absolutely everything to save Jahi's life.

I finally was able to view the video of the attorney and hospital spokesperson last night, after the information was revealed in court yesterday. Prior, I was having trouble viewing it, because for some reason I could get no sound on my computer for that video.

After yesterdays court proceedings, IMO, the spokesperson for the hospital had every right to call out the family attorney as he did. He was honest about the decievement that the attorney had been portraying to the media and public. He was honest that Jahi is deceased and considering the misinformation that has been spread about her not being deceased, it was necessary for him to set the record straight with his statements.

In one of my previous jobs, I held a position in which attorneys would continue to frequently debate in front of my desk after they left court. So maybe that is why, I did not see the video in the same way that others did.

 

[Donjeta]

It might have saved her life. CHO imo has clearly not gone about its business with care and dignity but have trashed the family, just listen to the spokesman. They are trying to hide anything that could be used in a med/mal suit. They missed her bleeding at source. They didn't check her bleeding to see it before it became a pouring mess for family to see. IMO she should have been back in surgery before the family were brought in. An attorney would have caught that at the time and been able to say without doubt the minutes she was left unattended and not checked on. 4 or 5 etc.

CHO might have handled things all wrong in the OR, in the recovery room or in the PICU but I don't really see how disconnecting her vent would serve to cover anything up.

There is no reason imo to pay a lawyer to stand at the bedside with a timer, a family member can chart the intervals between nurse check ups just as easily.

 

[popsicle]

http://www.ktvu.com/news/news/local/agreement-reached-how-move-jahi-hospital/nccK5/

The family said as they move forward they will not disclose where or when they will be moving Jahi out of Children’s Hospital. They are asking for privacy in the very public battle over life and death.

Now they want privacy..........

Here is my big problem with all the mess this week...

According to Christopher Dolan, the family attorney for Jahi McMath, the process to move Jahi will involve several steps. He said there must be communication between Children’s Hospital and the receiving facility, the family must give the receiving facility paperwork of Jahi’s health care status and she must be transported in an ambulance that can switch her to a portable ventilator.
Dolan also said Alameda County Coroner’s Office will be involved.

None of that is any different than what CHO was standing firm on from the beginning in regards to moving her. jmo

 

[Elley Mae]

http://www.ktvu.com/news/news/local/agreement-reached-how-move-jahi-hospital/nccK5/

The family said as they move forward they will not disclose where or when they will be moving Jahi out of Children’s Hospital. They are asking for privacy in the very public battle over life and death.

Now they want privacy..........

thanks for the link iluvmua

snipped from link

Winkfield disagrees with the Alameda County Coroner’s Office issuing a death certificate on Friday. Winkfield claimed the certificate was not immediately produced, but she requested one because it was a requirement by Children’s Hospital in order to allow for Jahi’s release.

 

[popsicle]

Nick Smith ‏@nicksmithnews 2m
#NEW Information: Family of 13-year-old on ventilator: "we feel very comfortable we will have #Jahi in a new facility soon."