Mom of 13yo on vent fights for 2nd opinion- hate on display

[thyme4change]

I googled the place that they have lined up to take her in New York - New Beginnings or something.  It is an outpatient facility (problem #1) and it is run by a hairdresser (problem #2.)  I hope they have professional medical personnel on staff, but it sounds more like rehab than care (problem #3.)  I suspect that not only are they not able to get the right medical personnel in place to get the body transported, but that they don't even really want to take the girl, but are just using the family to get publicity so they can continue to fundraise for their little clinic.

On Tuesday, the order will expire and the vent will be turned off.  On Wednesday, the family will make a bunch more accusations towards the hospital.  On Thursday, no one will care anymore.  I wish I could be a fly on the wall for that lawsuit.  

[Deleted]

If there is provable medical error, some money might be forthcoming.  Too bad it won't bring the little girl back.

[justme]

Oh dear, apparently Terri Schivo's family foundation has become involved.

www.cnn.com/2014/01/01/health/jahi-mcmath-girl-brain-dead/

[Deleted]

I hope she does.

[mmhmm]

You hope she does what, nutty?

[sesfw]

This story I'm about to relate is very sad, as sad as this 13 yr old.

A lady in her 30s choked on some food the evening of Dec 28 and had a heart attack. She has a husband and two sons, age 12 and7, and has been declared brain dead. Zero hope for recovery. Her family is meeting today with a foundation for organ donation and when that is set up she will be unhooked from everything and allow nature to take its course.

The family hopes their wife/mother/daughter can help others have a better life, and this will be her forever legacy.

I wonder if the mom of this girl in question has thought of this? Its sad she has to go but at least let others live.

[justme]

Unfortunately, most of what I'm hearing is that even if she was taken off life support the odds of any of her organs still being suitable for transplant are very slim after being brain dead for 3 weeks.

[the flying reindeer]

Jan 2, 2014 15:45:58 GMT -5 justme said:

Unfortunately, most of what I'm hearing is that even if she was taken off life support the odds of any of her organs still being suitable for transplant are very slim after being brain dead for 3 weeks.

You are probably right. I remember reading the day this story first hit the news that they might never find what actually caused her death because of the autopsy had to be done before too much of the body deteriorated.

[Tennesseer]

Jan 2, 2014 15:42:43 GMT -5 sesfw said:

This story I'm about to relate is very sad, as sad as this 13 yr old.

A lady in her 30s choked on some food the evening of Dec 28 and had a heart attack. She has a husband and two sons, age 12 and7, and has been declared brain dead. Zero hope for recovery. Her family is meeting today with a foundation for organ donation and when that is set up she will be unhooked from everything and allow nature to take its course.

The family hopes their wife/mother/daughter can help others have a better life, and this will be her forever legacy.

I wonder if the mom of this girl in question has thought of this? Its sad she has to go but at least let others live.

For those that did not read this story yesterday, this is a sad but uplifting story too:

A nurse in a Michigan hospital kissed the patient's forehead. More than 6,000 miles away, Sanaz Nezami's family in Iran watched the simple act over a laptop computer and wept.

Nezami, a vibrant 27-year-old woman who could speak three languages, wanted to pursue an advanced degree in engineering at Michigan Technological University. Instead, she was brain dead just a few weeks after unpacking her bags in a remote area of the United States, a victim of a fatal beating by her new husband, according to police.

Nezami's time in Michigan's Upper Peninsula can be marked in days. Her impact, however, will last much longer. Technology allowed family in Iran to watch her final hours and build an emotional bond with nurses whose compassion for a stranger from an unfamiliar culture gave great comfort to shocked, grieving relatives a world away.

The family's faith in the staff led to consent for an extraordinary donation: Nezami's heart, lungs and other life-saving organs were transplanted to seven people in the U.S., a remarkable gift that occurs in less than 1 percent of all cases.

"We wanted God to perform a miracle and bring Sanaz back to life," her sister, Sara Nezami, said in a phone interview from Tehran. "But this is a miracle. Sanaz gave her life in order to give life."

Nurses, family bond online as Iranian dies in US

[zibazinski]

Oh, no, the Schaivo family again. Their 15 minutes of fame just wasnt enough. Maybe they'll trot out pictures of their poor daughter again. Shameful behavior for people that are supposed to love you. My family are as big of assholes as those Schaivo people which is why I left my EX and not my family as my medical guardian. Because he wouldn't make a public spectacle of me for 15 minutes of fame.

[DVM gone riding]

Since we are discussing both these cases I found this article intersting

www.cnn.com/2013/12/28/health/life-support-ethics/index.html

basic idea is that we are doing everyone a disservice with the terminalogy and should use "neurologic death" and "mechanical support" in place of "brain dead" and "life-support" 

[mmhmm]

I read the story of the Iranian girl earlier today, Tennesseer.  A bittersweet ending of a young life, full of promise.  I hope her family can find peace.  It's a terrible loss.

[EVT1]

Also read that one- and I think it tells the story of the real USA.  Compassion and empathy for others regardless of who they are- and no other profession lives in that world like EMS, Nurses and Doctors do. 

I really feel for whomever gets the short straw and has to shut off the vent on this girl.  I could not do it- even though it is past time to let her go. 

 

[Deleted]

The mom does not need to be publicly humiliated by stating "my bad"^{_{. She will come to accept it and out of the public eye}}. Few of us have ever gone through what the mother is now going through.


I was responding to this post and was saying I hope she does come to accept it and out of the public eye.

[Deleted]

I found this blog to be an interesting summary:

Trials & Tribulations: Jahi's Legacy

[Tennesseer]

Jan 3, 2014 10:05:12 GMT -5 @txsbbtc said:

I found this blog to be an interesting summary:

Trials & Tribulations: Jahi's Legacy

Very ìnformative.  Thanks.

[mmhmm]

Thanks, @txsbbtc!  That blog article is excellent.  It covers it all and it covers it well.  Despite the story from the family, and the press, about a "simple tonsillectomy", it appears this surgery was anything but simple!  It went beyond even a standard UPPP.  I'll excerpt from the article in txsbbtc's post:

"From CHO’s attorney’s response court filings on December 20, we learned that Jahi had not had a simple tonsillectomy, but actually several invasive procedures to open up her upper airway. She’d undergone an adenotonsillectomy, uvulopalatopharyngoplasty, and submucous resection of bilateral inferior turbinates. In laymen’s terms, her tonsils and adenoids had been surgically removed from the back of her throat, her uvula (that thing hanging down at the back of your throat) and soft palate removed or remodeled, and excess soft tissue removed from the back of her nose. These tissues are very fragile and highly vascular, meaning they can bleed a lot, as anyone who has had a nosebleed can testify to."

The article itself contains a good deal more.  It's definitely worth a read, IMO, if you've been following this case. 

[sesfw]

Everything about these lovely people is so sad.  The emotional turmoil and pure pain they are going through even though there are so many walking with them.

God's blessings on all of them.

[justme]

That is a great summary, pretty much sums up all that I've gleaned from all the articles I've read.

[justme]

Apparently they've agreed to let her out of the hospital as long as the mom takes full responsibility for the child and recognizes that any movement could result in cardiac arrest. They are not required to perform the surgeries she wants.

www.mercurynews.com/breaking-news/ci_24840744/jahi-mcmath-mom-can-remove-brain-dead-daughter?source=redbar

I near about faceplanted at this part

He said that getting Jahi nutrition quickly was key because she has not had any for "24 days."

He being the family's lawyer. Isn't the rule a human can't live without food for more than 3 weeks, which has already passed, shouldn't that be a sign to the family?

Still no word on where or how she's going to leave the hospital.

[mmhmm]

The family is going to have to find a doctor who'll perform surgery on a deceased person.  I'm sure they can do that.  There are doctors who will do almost anything for the right amount of money, unfortunately.  Still, the action, to me, is unethical.  If they can get that done, and arrange for transport to an accepting facility, the drama is, essentially, over.  The thought of putting that child into a facility operated by a hairdresser and an undertaker gives me the creeps, but I'm not the family.  It's their decision.  For the little girl - her trials are over and have been over.  She isn't suffering.  That gives me some peace.

[DVM gone riding]

its possible (I don't know) that she has been receiving IV TPN--food through a port in her arm and her family doesn't see that as "nutrition" because it isn't going into her stomach etc. at very least she has been receiving IV fluids and probably dextrose.

[justme]

You're probably right that it could be IV food and the family doesn't realize or understand it.

From what I've read, if they do put a port into her stomach it won't leave there (due to non-function brain) and that things will spiral down from there. If so, and they do take her home, I hope the family's children aren't around to witness that happen to their sister.

[mmhmm]

Jan 3, 2014 16:24:29 GMT -5 DVM gone riding said:

its possible (I don't know) that she has been receiving IV TPN--food through a port in her arm and her family doesn't see that as "nutrition" because it isn't going into her stomach etc. at very least she has been receiving IV fluids and probably dextrose.

I'd say, probably, only the fluids.  I doubt the hospital would use TPN on a deceased person, either.  It just doesn't make sense and would, I think, be just as unethical as performing surgery on a deceased person.

[DVM gone riding]

I find it really odd that they keep saying it isn't "ethical" to perform surgery on a dead person. In reality they do it all the time. Where do you think new MD's and med student's practice I sure as heck won't the first time someone tries something new fangled to be on a deceased person and not me! I think it is to bad more cadavers aren't donated for medical procedures. I don't get this family. I am a Christian too. They should let their dead daughter go to peace in heaven rather than tormenting her shell of a body.

[zibazinski]

Stuff like this terrifies me. I'm related to whack jobs who'd think nothing of putting me though this to garner some publicity and sympathy for themselves. 

[mmhmm]

Jan 3, 2014 16:33:45 GMT -5 DVM gone riding said:

I find it really odd that they keep saying it isn't "ethical" to perform surgery on a dead person. In reality they do it all the time. Where do you think new MD's and med student's practice I sure as heck won't the first time someone tries something new fangled to be on a deceased person and not me! I think it is to bad more cadavers aren't donated for medical procedures. I don't get this family. I am a Christian too. They should let their dead daughter go to peace in heaven rather than tormenting her shell of a body.

I think new docs and docs-to-be practicing on cadavers is quite different than performing a surgery that is expected to actually accomplish anything other than to give the person performing the surgery some practice.  In the latter case, nothing is expected to really be accomplished.  In the former case, that of a living person, some benefit is expected.  It's a narrow line, to be sure, but I can see where the hospital is coming from and I definitely agree with their stance.  By putting in a feeding tube and performing a tracheostomy, the doctor will be contributing further to the irrational hope to which these parents are clinging.  That's just wrong, as I see it.

[zibazinski]

Wouldn't the doctor have to find a hospital or clinic that'd allow them to do this?

[lynnerself]

Many cadavers are donated (in a will like organ donation).

What happens if her heart stops during transport? Are they going to do CPR on a dead body?

There is still another mediation meeting going on this afternoon with another judge.

[mmhmm]

Jan 3, 2014 17:08:04 GMT -5 zibazinski said:

Wouldn't the doctor have to find a hospital or clinic that'd allow them to do this?

I would certainly think so, zib.  However, this is a really unique case.  I've certainly never dealt with anything like this.  Were the person living, one would need a properly equipped operating room; however, this isn't a living person.  It's just really, really weird to think about all the different aspects and complications when dealing with this mess.