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

[SophieRose]

I also have a lot of compassion for the OTHER families of kids in that ICU right now. I don't believe what this family is doing is appropriate to the rights of the other families in the ICU. This, IMO, has crossed the line into insensitive and entitlement behavior. This should not be allowed in the common ICU waiting room. The family should have asked and been provided with an empty conference room to celebrate. How sad for the REST of the families in that ICU.

This ONE family’s situation has grown to dominate that hospital and unit, which really isn’t fair to the other families and patients (and staff). I really hope that those other ICU families have been provided with a lounge type area to go to, or an empty conference room, etc. so they can have some quiet and privacy as well. I don’t imagine any of them would feel comfortable trying to share a waiting room with the large group of Jahi’s supporters putting up a tree in the ICU waiting room and opening Christmas presents.

According to this document filed by CHO (page 3) the hospital secured a room where the family could meet.
http://www.docstoc.com/docs/165734995/jahi1

 

[BeginnersLuck]

http://www.contracostatimes.com/new...ily-faces-difficult-decisions-before-deadline

An Alameda County Superior Court judge ruled Tuesday that the hospital can disconnect Jahi on Monday at 5 p.m. from the ventilators. The family could decide to appeal the case, Dolan said, and if a court decides to hear such an appeal, the order that has prevented the hospital from disconnecting the ventilators could be extended.

The family also could decide to accept offers for assistance, including, Dolan said, one that came from a religious, faith-based group that has facilities from as far away as New York. The group reached out to the family and offered to move the teen and keep her on a ventilator.

But Dolan said the family must weigh the cost of such a move and whether family members would be able to travel with her.

They also will discuss whether it's time to accept the diagnosis of doctors that Jahi will not recover.

 

[Donjeta]

http://www.mercurynews.com/scott-herhold/ci_24797009/at-bottom-jahi-mcmath-story-is-tale-mothers

At bottom, the Jahi McMath story is a tale of a mother's guilt
By Scott Herhold

 

[Linda7NJ]

He was dead. No one can survive 20 minutes without oxygen.

"Prince Friso of the Netherlands, the second son of Queen Beatrix, was on Saturday night fighting for his life in Austria after an avalanche left him without oxygen for up to 20 minutes. And the Dutch royal family are now facing up to the agonising realisation that the 43-year-old may never recover from his injuries."

http://www.telegraph.co.uk/news/wor...ble-trauma-facing-the-Dutch-royal-family.html

If the body temp is low... As in buried in snow, I believe a person can survive.
I recall a young boy fell into frozen pond and had been trapped underwater for at least twenty minutes. He was resuscitated and his body temp slowly brought up... He not only survived, he was none the worse for wear.
I'll see if I can find the documentation of that case.


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[Linda7NJ]

I googled it... I can't find the specific case I vividly recall as there are soooo many incidences.


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[SophieRose]

Holy cow, what a mess. I absolutely cannot believe that the hospital security IN A PEDIATRIC HOSPITAL is allowing this to happen in the lobbies and sidewalks! Hospital lobbies and sidewalks are NOT public places, and they CAN escort these kooks off the property, or forcibly remove them.

For the love of pete, security in MOST pediatric hospitals (especially urban facilities) is very intensive-- the risks of abductions, as well as the frequent angry disputes among estranged parents typically mean security is very high. Many places you have to sign in, even as a parent, to get a badge EVEN to be in the lobbies and waiting rooms. I simply cannot believe the security staff is allowing this circus to happen. They have a bigger duty to the patients, staff, and parents of the patients, than they do to the weird and odd members of the public who show up inserting themselves into this sad story.

Escort them off the property!

And I do agree, while the family has my extreme sympathy, this public fiasco is occurring as a DIRECT result of the way the family chose to rally the public. They should have done this at a church or other more appropriate public space, if they had to do it at all. I cannot believe that their pastors or other more clearly thinking people did not dissuade the family from rallying the public to demonstrate and march at the hospital. My heart really goes out to the other patients, staff, and families who are forced to deal with this mishandled situation. It's bad enough Jahi is dead, but to put all these other people thru this is just...I have no words. Security needs to step up and get these kooks off the property. Potentially a very dangerous situation.

Visitor Information
http://www.childrenshospitaloakland.org/main/visitor-info.aspx

Visitor Identification
Everyone visiting our medical center is required to check in at the Ambassadors' Desk in the entry lobby. The ambassador is there to help direct you and provide any information you may need about the hospital. He or she will issue you a color-coded badge so you can find the appropriate floor/s, and will quickly screen little ones for colds and other contagious illnesses. We have a special sticker for kids to wear after screening.

Who May Visit
•Parents and guardians are welcome at all times, day or night. Because space is limited, only one parent/guardian may spend the night in a child's room.
•Unfortunately we don't have space for young visitors and siblings to spend the night. Please make arrangements for the care of your child's brothers and sisters.
•Because of limited space, please have no more than four visitors at one time in a room.

Can people get past the Ambassadors' Desk without obtaining a badge? The mother's brother gave the room number in an interview, not sure if it's Jahi's room or the family's meeting room, but with that information the wrong people could have found their way to the family.

 

[wendiesan]

Regarding the specific procedures undergone by Jiha McMath.

http://www.docstoc.com/docs/165734995/jahi1

"Ms. McMath was admitted to Children's Hospital on December 9, 2013, for a complicated surgical procedure consisting of an adenotonsillectomy, uvulopalatopharyngoplasty, and submucous resection of bilateral inferior turbinates."

 

[meanmaryjean]

If the body temp is low... As in buried in snow, I believe a person can survive.
I recall a young boy fell into frozen pond and had been trapped underwater for at least twenty minutes. He was resuscitated and his body temp slowly brought up... He not only survived, he was none the worse for wear.
I'll see if I can find the documentation of that case.


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The boy you're referring to is Jimmy Tontelevich (which I'm certain I've misspelled- I've only heard his name spoken, not written). He slid into a frozen Lake Michigan in Chicago while sledding in the late 80s- early 90s. A camera crew from WGN TV was there filming kids sledding, and a cable from their truck was used by the diver who eventually brought him up from under the ice. He was the beneficiary of the protection that cold water immersion proides for the brain - esp. of children. Jimmy is, to my knowledge, alive and well today. (I was an RN in Chicago at the time of this event)

 

[meanmaryjean]

There is some discussion upthread questioning the efficacy of doing the 3 procedures Jahi had separately. Please reference the links in my post a couple up, on pediatric obesity and sleep apnea. The "two" procedures, UPPP and adenotonsillectomy occur at the same time. There really wouldn't be any indication to "separately" perform these procedures when the intent is to attempt to correct sleep apnea. They are "paired" procedures with the UPPP. The only reason to do "just" a UPPP is if the patient has had tonsils removed some time in the distant past. The nasal turbinate surgery "can" be performed as a stand alone procedure, but I can't think of any reason to do so if the pt is undergoing UPPP to "open up" their airways to more airflow. The risks of another General Anesthetic far outweigh the risks of the few minutes of extra surgical time.

This case has been persistently presented as a tonsillectomy gone wrong, and not as a complex surgery for sleep apnea and other sequelae related to pediatric morbid obesity. When the case first reached the national news, I was as captivated as everyone by the reports of a "routine" T & A and brain death. I knew immediately there was much more to the story that wasn't being told. And when I saw the first pictures of Jahi (where she is both very cute with a great smile, AND clearly morbidly obese with a lot of facial and upper body adipose), I knew with 90+% certainty that she was having sleep apnea procedures, not "just" a tonsillectomy.

This persistent presentation in news articles of "healthy" and "elective", IMO, is denial of the very serious issues this young girl faced in her condition in the months and years leading up to surgery, and in the hours and days after surgery. She didn't develop the need for the surgery over a few months; this is a situation of very long standing--years. It also does nothing to educate the public about the very serious risks of this kind of surgery in obese children and teens.

I posted a few days ago that the only reason I can think of why this very obvious condition of the surgery being needed due to her morbid obesity and co-morbidities is that these medical issues are being minimized and omitted in news articles out of some worries about appearing to "blame the victim" for her size and complications. No one wants to appear to engage in "fat shaming" in a catastrophe such as this, but there are ways for reporters to respectfully phrase their words and present a far more accurate picture of why this young girl was undergoing this complex surgery. It is hard enough to discuss obesity and health in general articles,. It is even harder to understand and accept the impact of these issues when you see the face of a cute young teen, facing many physical, physiological, social, and psychological complications of her size. It breaks your heart to see a child like this, and I am sure with all my soul that Jahi's mother was very worried about her daughter's size, and the impact on her health and future. I understand why she considered and brought Jahi for the surgery. I ache for the guilt she feels and expressed in that article. I think the mother did what the doctors recommended to try to begin to help Jahi with her weight and other health problems. I don't think she fully understood Jahi's risks, but I do think she is a wonderful, loving mother trying to help her child. I have tremendous sympathy for her.

But for the news reporters and articles written, I believe it is extremely misleading to the general public to frame this catastrophic situation as just a routine elective tonsillectomy gone wrong in a healthy young teen.

A collection of postoperative events lead to her cardiac arrest. She was bleeding badly enough to have 4 units of blood. And now she is brain dead on a ventilator, with the family in extreme denial about the reality of her condition.

There are hug gaps in what we know about what happened in the ICU. It will all come out later-- of that I'm certain. The family will be compensated for their tremendous loss-- and hopefully it won't need to be in the court system very long. "Even" if the staff did everything "right" in her care, and still she had complications and died, the fact that she is brain dead from an elective procedure (elective, meaning non-emergency), means that the hospital will take out the checkbook to compensate the family. If things happened that should not have happened, the check will be bigger.

Because of this case, there may even be a moratorium on pedes sleep apnea surgeries at that hospital for a while, until a thorough review of the procedures and hospital care can be done. I think that would be a good thing. But I am not ready to condemn the entire OR, PACU, and ICU staff for inadequate care until I learn more about what happened.

BBM: Again- this is exactly the problem when all information is filtered through the parents. I'm just struck by how much this reminds me of the lung transplant girl's story- specifically as it relates to the media being fed a VERY biased view of what is going on- the hospital and physicians being hogtied by HIPAA rules and regs.

 

[SophieRose]

According to this document filed by CHO (page 3) the hospital secured a room where the family could meet.
http://www.docstoc.com/docs/165734995/jahi1

And the family must have used this room to celebrate Christmas.

http://www.insidebayarea.com/news/c...ily-faces-difficult-decisions-before-deadline

About 15 family members gathered to observe the holiday Wednesday with Jahi inside the room at Children's Hospital Oakland where she has been hooked to a breathing marching since Dec. 12, when she was declared brain-dead three days after complications developed during her recovery from surgery to correct sleep apnea and other health issues.

Presents were under a tree for Jahi and her relatives carried on with some of its holiday traditions including board games, dominoes and playing cards.

 

[Linda7NJ]

The boy you're referring to is Jimmy Tontelevich (which I'm certain I've misspelled- I've only heard his name spoken, not written). He slid into a frozen Lake Michigan in Chicago while sledding in the late 80s- early 90s. A camera crew from WGN TV was there filming kids sledding, and a cable from their truck was used by the diver who eventually brought him up from under the ice. He was the beneficiary of the protection that cold water immersion proides for the brain - esp. of children. Jimmy is, to my knowledge, alive and well today. (I was an RN in Chicago at the time of this event)

Yes! That's the boy!
I'll never forget watching as his lifeless limp body was pulled from the water.... Amazing!


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[Linda7NJ]

Here's a woman that survived 80 minutes under the frozen ice.
http://en.m.wikipedia.org/wiki/Anna_Bågenholm


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[momrids6]

Thanks K_Z for explaining the many consultations and procedures that had to occur before Jahi was approved for surgery. You made it very clear that this was far from a simple operation.

I'd like to know more about the possible causes of the post-operative bleeding,

I am very concerned her bleeding was due to, or made worse by the family's "suctioning".

 

[momrids6]

And the family must have used this room to celebrate Christmas.

http://www.insidebayarea.com/news/c...ily-faces-difficult-decisions-before-deadline

This article states "In hopes of having as normal a holiday celebration as possible, the entire family of Jahi McMath spent Christmas Day in the waiting room together at Children's Hospital Oakland."

http://www.mercurynews.com/ci_24793526/jahi-mcmath-family-tries-have-normal-holiday-celebration

so we are left to wondering.

 

[SophieRose]

This article states "In hopes of having as normal a holiday celebration as possible, the entire family of Jahi McMath spent Christmas Day in the waiting room together at Children's Hospital Oakland."

http://www.mercurynews.com/ci_24793526/jahi-mcmath-family-tries-have-normal-holiday-celebration

so we are left to wondering.

I'm sure it was in the room that the hospital provided to the family. I can't see them putting up a tree in the PICU waiting room.

 

[StephanieH]

I don't think the constitution extends to keeping dead people on life support at the hospital's expense. (At some point, insurance will stop paying.)

I understand that Jahi's mother feels guilt about allowing the surgery, but Jahi is already gone. If they appeal, I don't think it will do anything other than delay the inevitable.

The irony is that courts are hesitant to intervene when a parent refuses to allow a child to have a blood transfusion because of their religious beliefs, but will intervene to remove a child from life support.

 

[SophieRose]

http://www.ktvu.com/news/news/local/family-works-move-jahi-mcmath-new-care-facility/ncWR5/

The family of Jahi McMath is working towards moving the 13-year-old, to a care facility that will keep the girl on life support.

On Thursday the family’s lawyer, Chris Dolan, announced that a Bay Area sub-acute care facility indicated that they could accept McMath and provide her with the nutrition, ventilation support and other care she needs to stabilize her to assist in reaching “maximum medical improvement.”

Dolan adds that in order to transfer the girl, she would need a tracheostomy tube and gastric tub to provide stale sources of air and nutrition before she could be accepted into the facility. He has reached out the hospital, and says he’s hoping they’ll cooperate.

 

[SophieRose]

http://www.contracostatimes.com/new...ily-faces-difficult-decisions-before-deadline

"They told us there is a bed, they care for children like her all the time," Dolan said. "They believe they can provide her with care and support and treat her as if she's a living person."

Before moving Jahi, the family is trying to determine if the unnamed facility will agree to place a feeding and breathing tube in the girl, and whether her insurance will cover the move and future care. The family has declined to speak about costs related to Jahi's care, saying she is "priceless."

If the family is unable to move Jahi, Dolan said they will appeal a court ruling that allows doctors at Children's Hospital Oakland to disconnect Jahi from the ventilator on Monday at 5 p.m.

 

[Minette]

Oh, gosh. I understand the family is fighting against accepting what happened to Jahi, but this:

Dolan adds that in order to transfer the girl, she would need a tracheostomy tube and gastric tub to provide stale sources of air and nutrition before she could be accepted into the facility. He has reached out the hospital, and says he’s hoping they’ll cooperate.

...just makes me so sad. For one thing, it is asking the hospital to provide additional surgical (maybe minor, I don't know) procedures on Jahi when she has already been declared brain dead AND the hospital is sure to be facing litigation over procedures already performed, and for another, 'maximum medical improvement' is (IMO) a meaningless phrase. If it means 'keeping a heart beating for as long as possible when the brain can no longer order the lungs to breathe' that is one thing. If it means prolonging 'life' (and can we really call it 'life support' at this stage?) in the hopes that Jahi will miraculously recover then I don't see how this could be considered medically ethical at all.

 

[SophieRose]

Family's important announcement at 6:00 pm PST
Jahi's uncle and attorney talking. Facility in Greater Bay Area, within 50 miles of CHO. Attorney says it will be paid by employer insurance. A group of Catholic doctors mentioned the facility. Uncle said she moved her shoulders today.