Family wants to keep life support for girl brain dead after tonsil surgery #3

[MEN3C]

I've been trying to be nice but, I just don't get some things.

I am having a hard time understanding certain things. (Like why was Jani kept in hospital). My Nikel came home with us SAME DAY! Look up Vanderbilt Children's Hospital! It is a leader in child care. Jahi's hospital claims to be great too! Something is off here if they felt she need to be in PICU! This situation hits home hard for me. I dealt with my own uncertainties, but I knew the doctors, the hospital, and I did my research.

Something other then the duel surgery happened to put this baby in PICU! The scraping of the throat is part of an adenoid/tonsillectomy.

Something else happened here! JMO.

Nikel had some throat bleeding, and they warned us of that. He was tired, and they warned us of that too. I was told, initially, because my son had been deprived of sleep for so long because of his sleep apnea, he may sleep for three days if not a week once he started to recover. YET! THEY SENT HIM HOME THE SAME DAY!

That leads me to believe that Jani's surgery was less then routine. IF Vanderbilt wouldn't keep my 20 plus over weight child overnight, then what is different in her home state other then we aren't hearing the full truth?

Again, I want to reiterate that I don't know the specifics of this case at all, but there are many indications which would lead the physicians to keep a patient overnight. Among them is the presence of severe OSA (obstructive sleep apnea). I will try to find the guidelines for a US hospital (many times the guidelines are posted internally, or in a published journal which you would need access through via a university library), but for comparison, here are the guidelines for the John Hunter Children's Hospital in Australia for post-operative admission to the Pediatric ICU (PICU) post tonsillectomy (look at page 3 of that document).

 

[Roxye]

If you go back and read the other threads- you will find this was not EVER routine surgery. Only her FAMILY has stated that it was. The PICU stay was planned from the beginning due to her existing co-morbidities.

I've been a part of all the threads, but I didn't realize it was pre-planned. That means it was more then a 'normal' surgery.

This breaks my heart!

I helped my Nikel lose 20 pounds before his surgery. If I knew he was at a greater risk, I would have helped him lose 20 more before he went into surgery.

If a planned PICU was in his agenda, his surgery wouldn't have happened.

Sorry, I can't say more, I am at a bridge right now..... just in disbelief this even happened.

 

[thistle]

I had surgery to remove my tonsils/adenoids when I was 7 (many years ago). I have sleep apnea now, so I'm sure I snored then. I bled massively (I felt like a flap fell down against my throat), I was spitting out blood. I would not fault Jahi's family for having the surgery, it was something that could have helped her. Sometimes, things do not work out as planned...but they shouldn't blame themselves for trying to help her, & they should just realize that she is gone.

 

[JBean]

It's very unfortunate if bleeding was the cause, but hemorrhage is a known complication of this surgery. You have to respect the tonsils! I don't know anything about what happened in this specific case, but a bleeding tonsil can make getting an airway extremely difficult (lots of blood). There's a lot of blood supply around there - the tonsils themselves are supplied by multiple branches of the external carotid artery but the internal carotid artery lies only 2-2.5cm posterior (though in a very small percentage of the population, it can actually lie just deep to the superior constrictor muscle!).

I concur. My SIL's sister died after her tonsillectomy when she was a young mother. She was in her hospital bed and she started to hemorrhage. She rang and rang for the nurses- but no one came. It was devastating.

 

[Herat]

Brain Death Cases

http://thaddeuspope.com/braindeathcases.html

He has collected similar cases here.

The first case listed by Mr. Pope, on pt MB in DC 2008, is very interesting in it's commentary. The findings of the pediatric specialist on the brain death examination are essentially identical to those of the Stanford neurologist on Jahi. Actually Jahi's exam may have been more comprehensive.

The wording of the hospital's reasoning for discontinuing the ventilator is interesting, kind, and respectful of the family and their grief.

 

[gngr~snap]

IMHO one can R/O hepatic reasons for the bleeding UNLESS her SGOT/SGPT (love that you remember, like I do, the older terminology for the transaminases!!) aka AST/ALT were sky high and IF they were the surgery would/should have been cancelled.
Liver damage like a fatty liver would be observable at autopsy via section evaluations, if not gross observation.

Ok help me here please.
Call it a Chem7, BMP/BCP7, SMAC7
I don't know the correct term. MAYBE + ca (calcium) which would be 8...
Had that been ordered there is no ALT/AST
Is that correct?
I could see why they might not order a 12 or a 20 on a pediatric patient.
I could also see insurance issues in covering advanced labs for a child as well
moo

Sent from my SGH-T679 using Tapatalk 2

 

[MEN3C]

I concur. My SIL's sister died after her tonsillectomy when she was a young mother. She was in her hospital bed and she started to hemorrhage. She rang and rang for the nurses- but no one came. It was devastating.

My deepest sympathies for your loss.

 

[Isabelle]

If you go back and read the other threads- you will find this was not EVER routine surgery. Only her FAMILY has stated that it was. The PICU stay was planned from the beginning due to her existing co-morbidities.

What are your thoughts on patient self suction with a yankhauer and family performing same within a very short time post op?

While working in recovery we had our share of t & a's. I can recall suctioning at the corner of the mouth being cautious that the child did not close the lips around the yankhauer.

 

[mck16]

You know when my mother died she was 81 years old. She had retired 5 years earlier from work in the medical and political field. She was active, alert, and her expertise was still quite in demand. She was alert and with us until the very end. When she was deemed dead, I didn't want her to be gone. My brother, our family, my grandchildren did not want her to be gone, but we knew that she was. We did not fuss and fight with the hospital.
They offered to take her to ICU, put her on a vent, let us see her every two hours, and keep her alive artificially, but why in the world would we do that?

No one wanted to see her go, but why would we keep her here not in her real existence. Jahil is not her sweet self. I can't imagine a mother wanting her daughter to just lay there in a state of limbo. I just don't know what is wrong with her. I want my mother back too, but I realize that is not my choice and it will never happen. God only knows how many nights I wish she was here just for one more conversation, one more question. I would love for Jahil to wake up, and I believe in miracles, but I just don't think it is going to happen. I really wish it would. Wouldn't that be wonderful? jmo

 

[Irisha]

Did anyone catch CNN tonight Anderson Cooper?

Two lawyers going at it. All about the rights of the family to keep her on life support.

I think I am personalizing this because even if the family wins everything they want and are heroes for fighting to save her life I can only picture this sweet girl in a questionable long term care facility fighting infections, terrible bedsores, laying in her stool, multiple health problems from being on a vent long term with no viable brain tissue, no chance of ever seeing her smile again, eyes that will never open, the list goes on. Is that how her mother wants to her be?

I am not saying Jahi life does not have value but from where I sit how it can be a called a life. It is just existing. When I say I am personalizing it would be more heart wrenching for me to see my daughter in that state than to let her go peacefully knowing how vibrant she was (and I do have a daughter). But if I look at twitter and read comments under articles and blogs, many many disagree with me. Then I think what part of me is not getting it.

If she were to wake up I would say I was completely wrong but it appears that she will be vent dependant forever and never regain any brain function at all. I am trying to rationalize why people fight for brain dead people to continue artificial breathing to keep the body functioning. But those are their beliefs and they seem to have a very strong voice and are growing.

I can only believe that the medical personnel who were involved that day have wept. I know people are saying they were heartless but I don't believe that for one minute. No one would have wanted this outcome.

Hi Ms. Seal, I had Anderson Cooper on but was reading and missed it. I totally agree with your post. This has been such a heartbreaking tradegy for the precious childs parents. I've read they are very religious. I believe getting guidence from their pastor instead of the lawyer would be more helpful and help them accept that Jahi has passed away and a miracle will not happen, medically it's impossible. I do not believe the lawyer is doing what is in the best interest of the child or the parents. As a parent I know how hard it would be, but I just hope she will make the right decision soon and talk to her clergy. I do not believe the hospital personnal were at fault either.

When my youngest daughter was a child she kept getting tonsilitis. I asked her peds. dr about removing her tonsils. He said unless she gets it at least 4 times a yr. I wouldn't even consider it because 1 in 1,000 tonsil surgeries a child dies, and that's 1 to many. I never forgot that conversation. She still has her tonsils.

 

[Herat]

Brain Death Cases

http://thaddeuspope.com/braindeathcases.html

He has collected similar cases here.

The case of Brett Shively, Kansas 2006 is also very much worth reading. The hospital petitioned the court because the court had prevented the pediatrician from performing a brain death examination which the parents did not want performed. There is a very good discussion of Kansas rulings on brain death.

One of the key points made: "Regardless of the cause, brain death is a medical diagnosis.

They also cite a case where the court appointed a GAL. I see Dolan has made the mother the GAL for Jahi. Is that appropriate? I thought the court had to appoint the GAL.

 

[MsSeal]

but I do feel everything she has said and done have been out of her love for her daughter. That said I just can't get over the feeling that she has gone this far more for herself than what is ultimately best for her daughters body.

I have to say that I have also been hugely upset when I've read in different places how much she loves her daughter so much more to take this difficult path she is taking because I feel it insults all the mothers before her, who loved their children every bit as much, who have made the difficult decision to accept reality by letting their children go with grace (or anger or fear or pick an emotion) whether they have chosen to donate organs or not.

I had this exact same thought.

When she was talking about turning off the vent and she said "what kind of mother would I be" it tells me that her her guilt is so strong th that she would not be a good mother if she lets go. I can understand that but how many mothers have accepted what has happened and had the courage to do what they felt was the right decision - the very painful decision of letting the child be disconnected from the vent. Surely there have been mothers/parents who have this painful decision even on or near a holiday. We could hear many stories of mothers who made this decision but they did it privately and without the press.


I would like Mrs. Winkfield to know that letting her daughter go does not mean she is a bad mother. I think she feels guilty and discontinuing the vent would be the ultimate betrayal of her daughter after she allowed this risky surgery.

 

[K_Z]

Dr. David Durand was appointed Chief of Pediatrics early last year. Bet he thought he would never have anything like this in his long career.

http://www.bizjournals.com/sanfrancisco/blog/2013/02/childrens-hospital-oakland-names-dr.html

I think every hospital administrator and chief of staff in the country is "lighting a candle" (metaphorically) in support of this excellent facility. Geesh-- no hospital EVER wants to be in this kind of adversarial situation with a family.

My thoughts are with the hundreds of staff, patients, and families of the other patients at CHO (especially the PICU staff and other PICU patients and families), in addition to my very sincere and heartfelt wishes for Jahi's family and the mediators tomorrow. There needs to be some kind of resolution brokered that respects and dignifies the happy 8th grader that was Jahi, and also allows her family an "escape pod" to exit this fiasco. The need for them to "save face" with their supports and within their community cannot be underestimated. Even the hospital administrators know this.

Mrs. Winkfield has 3 other children. Three young souls who look to their mother to explain every difficult situation in the world. Three young kids who are probably even more confused than the adults around them. Three young kids who need their mom to hold it together for their sake. Three young kids who are confused when their mom says Jahi is alive, and all of the doctors and lawyers and court judges say Jahi is dead. Three kids caught in the middle of all this chaos, not knowing what, or who, to believe, but wanting deeply to believe their mom is "right". This situation has lifetime implications for all 3 of Jahi's sibilngs-- how they deal with conflict, what they believe, who they trust, etc.

School is back in session, following the winter break. Jahi's classmates are surely following all of this chaos. They must have so many questions. My compassionate thoughts are with their teachers, who will have to answer questions in a "public school approved way". Jahi's friends are in limbo, too. "Is Jahi alive, or dead? Is a miracle possible? What is brain death? Will she come back to school, or not? How do we support her, as an 8th grade class? Could this happen to me?"

The situation needs resolution soon, as in hours to days. IMO. Death is not optional for anyone. No one gets a pass on death.

In a perfect world, I'd like to see Mrs. Winkfield express a sincere desire to take her beloved daughter's body home, and arrange care for her in her final hours and days. OR....dictate the circumstances of withdrawl of life support. That would be such an example to the other kids, if done with truthfulness and tenderness. But I completely realize that this is my fantasy, and not Mrs. Winkfield's. I completely understand she is angry, and heartbroken, and distrustful of any medical authority figure, and that not much will change either her anger or her anguish. I just deeply wish there is some way to get thru to her, for her sake, Jahi's sake, and her other kids. Some way for her to hold onto her beliefs, save face, and still let Jahi go peacefully. That's my fantasy.

I really don't like that my feelings of compassion for her are eroding.

 

[shana]

[snipped to address}They also cite a case where the court appointed a GAL. I see Dolan has made the mother the GAL for Jahi. Is that appropriate? I thought the court had to appoint the GAL.

This is confusing to me as well. My layperson's understanding is that a GAL is appointed to represent the one who needs protecting; in this case, a minor child. Jahi is already being represented by her mother. Who has standing to speak for her objectively, independently of this fight?

I am left to wonder if there is not some issue with Jahi's bio father and this move was somehow done to exclude him and his say.

I had asked about him way upthread, wondering if he had weighed-in on the situation. I was furnished his name as well as learning that he had apparently participated in a meeting over his bio daughter's fate. (thank you, posters)

Is he in opposition to Jahi's mother? Is he a deadbeat dad who could be simply omitted from the discussion? Did he consent to be removed?

How did this status receive the blessing of the court?

I remain confused and perplexed.

~jmo~

 

[fruity]

I had this exact same thought.

When she was talking about turning off the vent and she said "what kind of mother would I be" it tells me that her her guilt is so strong th that she would not be a good mother if she lets go. I can understand that but how many mothers have accepted what has happened and had the courage to do what they felt was the right decision - the very painful decision of letting the child be disconnected from the vent. Surely there have been mothers/parents who have this painful decision even on or near a holiday. I should we could hear many stories of mothers who made this decision but they did it privately and without the press.


I would like Mrs. Winkfield to know that letting her daughter go does not mean she is a bad mother. I think she feels guilty and discontinuing the vent would be the ultimate betrayal of her daughter after she allowed this risky surgery.

Very well said.

I am beginning to have concerns that perhaps all of the misinformation being presented about brain death in the media is going to lead to grief and second thoughts for mothers who have been in a similar situation but chosen to remove the vent in a timely manner. Are they wondering if they should have waited for longer? I pray not.

 

[fruity]

This is confusing to me as well. My layperson's understanding is that a GAL is appointed to represent the one who needs protecting; in this case, a minor child. Jahi is already being represented by her mother. Who has standing to speak for her objectively, independently of this fight?

I am left to wonder if there is not some issue with Jahi's bio father and this move was somehow done to exclude him and his say.

I had asked about him way upthread, wondering if he had weighed-in on the situation. I was furnished his name as well as learning that he had apparently participated in a meeting over his bio daughter's fate. (thank you, posters)

Is he in opposition to Jahi's mother? Is he a deadbeat dad who could be simply omitted from the discussion? Did he consent to be removed?

How did this status receive the blessing of the court?

I remain confused and perplexed.

~jmo~

I too have been wondering about the thoughts of her biological father.

 

[SophieRose]

Pictures of father
http://www.sfgate.com/health/articl...ain-on-life-support-5072376.php#photo-5613961

http://www.greenwichtime.com/news/m...declared-brain-dead-5087264.php#photo-5613830

 

[BeginnersLuck]

This is confusing to me as well. My layperson's understanding is that a GAL is appointed to represent the one who needs protecting; in this case, a minor child. Jahi is already being represented by her mother. Who has standing to speak for her objectively, independently of this fight?

I am left to wonder if there is not some issue with Jahi's bio father and this move was somehow done to exclude him and his say.

I had asked about him way upthread, wondering if he had weighed-in on the situation. I was furnished his name as well as learning that he had apparently participated in a meeting over his bio daughter's fate. (thank you, posters)

Is he in opposition to Jahi's mother? Is he a deadbeat dad who could be simply omitted from the discussion? Did he consent to be removed?

How did this status receive the blessing of the court?

I remain confused and perplexed.

~jmo~

Maybe this will answer the question about the GAL status.

http://www.blanelaw.com/library/cou...-a-childs-injury-settlement-in-california.cfm

 

[MsSeal]

I don't know if this has been posted already.

Medical ethicists worry that Jahi's case threatens definition of death.

http://www.ktvu.com/news/news/local/medical-ethicists-worry-jahis-case-threatens-defin/ncbX6/

 

[MEN3C]

I don't know if this has been posted already.

Medical ethicists worry that Jahi's case threatens definition of death.

http://www.ktvu.com/news/news/local/medical-ethicists-worry-jahis-case-threatens-defin/ncbX6/

Law changes slower than medicine and technology. I am sure everyone here is aware of this by now, but there are two accepted definitions of death, one is the older and traditional definition of cardiopulmonary death, and the second being brain death. There was a time when people didn't even think the brain was all that important (in fact, famously, the Egyptians removed it through the nose before mummifying because they regarded it as a non-essential organ). Aristotle thought the heart was the place of intelligence as well. Heart function is much easier to see and measure than brain function - it beats, you can hear it and feel it even without any equipment. It is without a doubt the clearest sign of life. But in the end, the heart is essentially a box with four chambers and some tubes attached. So as technology improves, it's one of the first organs which we can replace and/or keep functioning almost indefinitely. In fact, a heart will keep beating even if taken out of the body completely, if you put it in a saline solution with oxygen...(this is because the heart has intrinsic pacemakers - so the brain can modulate the heart beat by slowing or speeding it up, but the heart can maintain its own electrical rhythm without that input).

Brain activity on the other hand is much more complex and still only faintly understood. There is no way to 'feel' or 'look' at it. In fact you'd be surprised how 'new' it is that we firmly believe that brain is the center of 'who we are'. (Though remember, and as the court documents keep referencing, it's the brainstem that's so hugely important and why she is truly dead).

I saw an interview on CNN in which the host asked the mother what it would take to convince her that her daughter had passed away, and she said that she would need to see the heartbeat stop. I can understand why she would think that but if that is truly the definition than with new technology, we would have a humongous problem with people who have no brainstem function, but with massive interventions, continue to have heartbeats.....they would take up precious beds in the intensive care units while other children who have hope of recovery cannot use them. If you're going to say that, you're really saying that you remove a frog's head and as long as you can keep the heart going, the frog is alive! If by some technological marvel (which doesn't yet exist by the way) you could keep the brain alive without any cardiopulmonary circulation (by somehow only providing oxygen and nutrient to the brain), that person would still be considered a human being, but the opposite (keeping the body functioning with the head removed) would not be anyone's definition of a living human being. Scientists are working on ways to 'grow' human organs in the laboratory (for transplants). If someone grows a heart in the laboratory and it beats, is the heart a human being with full rights? That's essentially what is being argued here.

As I've mentioned many times, I have nothing but the deepest sympathies for the mother and the family and I completely understand their reaction to try to protect and do best for their daughter, and of course I feel profound sadness about the death of this little girl. But the longer this drags on, the more and more dissapointed I am in the courts. They could have stopped this much earlier - after they were convinced that the appropriate protocol was followed in the declaration of death, and certainly after the court appointed pediatric neurologist from Stanford also agreed that the girl was brain dead.

/sorry that was a bit of tangent post