Family wants to keep life support for girl brain dead after tonsil surgery #8

[BeginnersLuck]

I have suspicion that Dr. Byrne showed her the ice cube trick and this video was made at CHO to show to the courts.

If she was unstable at CHO, what would they have to do if her BP dropped to get it stabilized now?

After reading all the different cases where they have sustained BD bodies, two months time (give or take a week or two) seems to jump out at me as a approximate time for these bodies to either cease functioning or families made the choice to remove vent support. I recall one case lasting 168 days and one case where I recall steps were taken to rid the body of toxins.

What I have failed to find in literature, are details of the bodies condition over prolonged vent support. More specifically, details of the interior and exterior deterioration, what medical measures were taken to sustain bodily functions and combat infection.

I do realize that the measures taken and the condition of the individual body have a significant role in how long vital organs may continue to function.

Marlise Munoz family, have been the only ones so far, that have briefly spoke about her condition.

Going back to this two month (give or take a couple weeks) time period, it seems significant enough for me to make mental note of as a point in time where most bodies may begin to shut down, despite all measures that are taken or a point in which families say this is enough, because it has become so obvious inward and outwardly.

I would like to see, more published research that tracts the condition of BD bodies on prolonged vent support. I think it is necessary research that may be useful, for educating those that may choose to do what the McMath's have done or those that may choose to try and bring a fetus to a viable stage in a BD body.

There are people that support and fight for this prolonging after brain death, but I feel it is misleading to the public, because the "not so pleasant" details are withheld.

 

[K_Z]

Plus the smell has to be very apparent by now.

One thing that is a bit of a blessing about "odor control" is that Jahi's body is on a ventilator. The breathing circuit is "closed"-- meaning, both the inhalation and exhalation takes place inside of hoses that are not open to room air. The lung secretions are likely to be a dominant source of bad odors at this point, very icky and infected smelling. The circuit on her trach will somewhat contain these odors.

When someone on a ventilator has a breathing tube inserted thru the mouth, or as a tracheostomy, the suction catheters can be contained within this closed circuit, with a type of sterile plastic sleeve over the catheter. This is usually the method used in a hospital situation. This way suctioning can occur without disconnecting the circuit every time, thereby the patient has decreased exposure to infection, as well as the staff having less contact with secretions.

There are also suction catheters which require the circuit to be removed from the trach every time, and a clean or sterile catheter is used. A lot of people with long term home ventilator care situations don't need to practice "strict" sterile technique, but instead use "clean" technique.

For those interested, here are some pics of suction catheters, and a guide to "home care" suctioning of pediatric trachs. The procedure is pretty much the same for kids as well as adults. There are some risks with suctioning-- and prolonged or inappropriate deep suctioning can cause low oxygen conditions, as well as serious and abrupt slowing of the heart rate, with abnormal rhythms. Jahi's body can't cough up or mobilize secretions, so she would have to have deep suctioning to get the gunk out. She also can't cough or react to suctioning, so while she may have heart slowing or oxygen issues, it wouldn't cause her distress. Long term scarring of her lungs from deep suctioning probably isn't much of a concern, since she is deceased, and we are waiting for her heart to finish.

http://www.tracheostomy.com/care/suction.htm

http://www.bing.com/images/search?q...ach&qpvt=suction+catheter+for+trach&FORM=IGRE

Her PEG probably isn't all that smelly, unless the insertion site has infection. AFAIK, she has no major sources of open infection, like deep bedsores, or infected surgical wounds. Her mouth has no "breath" going in and out, so it may be somewhat smelly if you are close enough, and her mouth is open. (We have a saying in anesthesia that "bad breath is better than no breath at all".)

We can all imagine the types of odors produced "down below". Many of the odors of the bedbound can be controlled with scrupulous hygiene of the body, prompt changing and replacing of soiled linens, prompt removal of medical equipment containing secretions and body fluids, and odor masking things like scented body lotion, air fresheners, etc. This is a great deal of work, by the way, and requires very dedicated caregivers.

In my experience, comatose patients do have a type of "sickness" odor emanating from the skin itself, but if you are motivated enough, you can manage (but not eliminate) all of the odors associated with a comatose, bedbound patient. It is a lot of work, though. (IMO!)

 

[BuzzieCat]

Even if her body is being cared for in a home situation, there must be a doctor writing prescriptions for any medications and tube feed solutions she is getting - correct? I wonder what doctor is doing this for them.

 

[nrdsb4]

http://www.renewamerica.com/columns/byrne/140201

A ventilator is commonly mislabeled a respirator. After true death, neither chest compressions nor a ventilator can be effective. Air can be pushed into the airways and lungs. Elastic recoil might push air out for a few cycles, but then elasticity is gone and air cannot get out. After true death there cannot be circulation and respiration. Chest compressions and a ventilator can support vital respiration only in a living person, not a cadaver.

This guy is just unbelievable. And of course there are no comments allowed to counter any of his claims. It's really no wonder NW refuses to believe Jahi is dead. She's got this MD assuring her it is so. Interesting, though, he does reference the video as being 3 weeks after brain death was declared, so if he is correct, the video in question is an old one.

 

[BeginnersLuck]

http://www.renewamerica.com/columns/byrne/140201



This guy is just unbelievable. And of course there are no comments allowed to counter any of his claims. It's really no wonder NW refuses to believe Jahi is dead. She's got this MD assuring her it is so. Interesting, though, he does reference the video as being 3 weeks after brain death was declared, so if he is correct, the video in question is an old one.

Using your post as a jumping point.....

I get so discouraged when I see information from the off the wall websites being spread in social media. There are so many that lie and mislead. A lot are political and conspiracy in nature.

I feel like it's a ploy to dumb down America. What's disturbing are the many that will follow and believe. It's also disturbing to see some that promote these lies work in medicine or education. The use of credentials behind the name results in some not thinking twice about truth in what they write.

I think some very dangerous people become drawn to these journalistic atrocities and some very awful crimes have be committed as a result. It's a bad combination and I believe in "doing no harm". Disseminating false information causes harm.

 

[Madeleine74]

Using your post as a jumping point.....

I get so discouraged when I see information from the off the wall websites being spread in social media. There are so many that lie and mislead. A lot are political and conspiracy in nature.

Welcome to the Interwebs. Frankly bad information and 'snake oil' salesman have been in existence long before a computer was ever invented. Take a look at really old (I'm talking 1800's) publications and see the advertisements inside. All kind of claims for cures that we would laugh at, but I bet some people today would still believe.

People really are dumb. Not all people. Some people. And people can decide that something is the way it is and will look for any sign to confirm (i.e. confirmation bias). And some people are highly gullible. This has always been the case and always will be the case as long as there is humankind.

 

[BeginnersLuck]

Welcome to the Interwebs. Frankly bad information and 'snake oil' salesman have been in existence long before a computer was ever invented. Take a look at really old (I'm talking 1800's) publications and see the advertisements inside. All kind of claims for cures that we would laugh at, but I bet some people today would still believe.

People really are dumb. Not all people. Some people. And people can decide that something is the way it is and will look for any sign to confirm (i.e. confirmation bias). And some people are highly gullible. This has always been the case and always will be the case as long as there is humankind.

I understand this. I was venting my frustration. The internet has made it so much easier to disseminate this information to a wider audience. There are pluses and misuses to everything, including our freedom of speech.

 

[K_Z]

Welcome to the Interwebs. Frankly bad information and 'snake oil' salesman have been in existence long before a computer was ever invented. Take a look at really old (I'm talking 1800's) publications and see the advertisements inside. All kind of claims for cures that we would laugh at, but I bet some people today would still believe.

People really are dumb. Not all people. Some people. And people can decide that something is the way it is and will look for any sign to confirm (i.e. confirmation bias). And some people are highly gullible. This has always been the case and always will be the case as long as there is humankind.

Well said. And I completely agree. Remember that the average IQ in the general public is 100. That leaves a LOT of people in the left slope of the bell curve.

There is also the phenomenon of deliberately and intentionally disregarding science and medicine, and substituting "faith".

Years ago I worked in a major urban area. It always struck me how incongruous it was, that the Amish and Mennonite communities, who eschew electricity and other advances, and stop education in the 8th grade, are so completely accepting of any advanced medical technology to help their loved ones.

And yet another community I worked with, Christian Scientists, who are generally highly educated, would deny obvious and urgent symptoms in their children and members (such as coughing up cups of blood day after day). Typically if one of the Christian Scientists brought in their very sick child, they were breaking with their church, and ostracized. Usually there was a very bad diagnosis right away, and often it was too late for the child. Had this happen several times early in my career. The death of the child was blamed on the weakness of prayer and weakness of faith of the parent. Kind of like what we were all discussing about our concerns for Jahi's classmates being led to believe that "if only" they pray hard enough, and without ceasing, then Jahi will rise up and return to school. That is setting those kids up for a whole host of psychological and spiritual problems, IMO.

There seem to be "some" faith communities that "require" their members (by peer pressure, or otherwise) to deny science and medical facts, in order to demonstrate the fullness of their faith, and be embraced by their church community.

When someone is in crisis, emotionally, the threat of your closest supporters turning their backs on you has to be daunting.

 

[threecrazykids]

Even if her body is being cared for in a home situation, there must be a doctor writing prescriptions for any medications and tube feed solutions she is getting - correct? I wonder what doctor is doing this for them.

I am not only curious as to who's WRITING the scripts, but who is FILLING these scripts and providing the medical equipment/tubes/etc. that would need to continually be provided. I'm thinking of ALL of the things people use just in a day of care in a hospital setting, big and small. Everything from a Q-tip to medical tubing, the "nutrients" she's getting, etc. I highly doubt this is all generously being donated indefinitely.

Would it be a situation where the facility she's in orders everything she needs and never bill them for it? That care is going to bankrupt that facility if that is the case. There has to be SOMEONE footing the bill for all of the day to day necessities just to simply sustain her. It was my understanding there is no insurance - and even if there WAS, that it would cease at the time her death certificate was issued.

Whomever is footing the bill for this may be banking on the lawsuit for eventual payment...that's a HUGE risk to take, whomever it is.

 

[Wolfie]

There seem to be "some" faith communities that "require" their members (by peer pressure, or otherwise) to deny science and medical facts, in order to demonstrate the fullness of their faith, and be embraced by their church community.

I don't think that trust and distrust of medical care is based on intelligence or education. I think it's a personality type thing. I have friends who are mostly at least college educated, and while the ones I'm closer to trust modern medicine, there are an awful lot who fall into quackery and distrust medicine. Some of it seems to be how well they actually understand history and don't see it just as a story- we're so isolated from illness anymore that a lot of people don't understand how serious these things really are.

When someone is in crisis, emotionally, the threat of your closest supporters turning their backs on you has to be daunting.

This is a huge part of it when somebody falls into a group that is exclusively modern medicine denying- whether it be a religion, or any other support group. It is so sad and scary.

 

[Quester]

[JM]: Is it safe to have tonsil surgery at Children's Hospital Oakland?
http://www.contracostatimes.com/news/ci_25042494/jahi-mcmath-is-it-safe-have-tonsil-surgery

 

[Quester]

[JM], can you move?
By Paul A. Byrne, M.D.
http://www.renewamerica.com/columns/byrne/140201

 

[Madeleine74]

There's 2 separate issues (as I see them).

The first issue is what happens in medical procedures in a hospital. That includes the patient, their age, their health history, meds given, protocols followed, etc, etc, etc. There may be medical malpractice involved here. There also may not be. But what occurred to Jahi in the hospital is what the hospital will be potentially on the hook for.

Then the 2nd issue, the one that is creating the real storm, is understanding and acknowledging death and that some appearances of 'death' can be delayed, but ultimately not fully denied. Taking (what is in essence in a brain dead, brain stem dead individual) a corpse and keeping that body perpetually suspended on equipment that will simulate life to the extent it can for as long as it can is what has turned this case into a circus (IMO).

 

[Madeleine74]

As far as "trusting" hospitals and medical practitioners, we have evolved from the time when "the doctor knows everything." Now with the ability to easily get our hands on scientific information and medical information, and an understanding that no one person is omnipotent/font of all knowledge, we are in a position to better advocate for ourselves and loved ones.

My parents come from the generation of "I won't do it if the doctor doesn't tell me I need or have to." The doctor is king most of the time. My dad was stubborn and refused things like colonoscopies during his life and he passed at 87 a few months ago from Alzheimer's + a massive infection.

For myself I do my research, compile my questions, look at recent studies (ones published in peer reviewed journals), and advocate. I make sure to be a participant in my healthcare and not just assume my doctors will know all the angles or remember something that's important to me. For instance, I made my dentist write in big red letters on the front cover of my chart "No Epi!" so I don't mistakenly get dental anesthesia for normal procedures that contain epinephrine (which happened once when she forgot). Controlling? Maybe, but it reduces the risk and that's a good thing.

It's good to be in partnership with your doctors, even the attendings in a hospital. Trust but verify.

But that too assumes a basic understanding of and knowledge that life is finite, death really is final, and medical professionals really do have more information than a standard lay person. I joke that I got my MD from "Google University," but I trust my doctors to provide expertise and help me make informed decisions.

 

[Quester]

The comments are much more interesting than the article. JMHO

* * *

Dying while black - the case of [JM]
http://www.sfgate.com/default/article/Dying-while-black-the-case-of-Jahi-McMath-5194176.php#page-1

 

[Peliman]

I am not only curious as to who's WRITING the scripts, but who is FILLING these scripts and providing the medical equipment/tubes/etc. that would need to continually be provided. I'm thinking of ALL of the things people use just in a day of care in a hospital setting, big and small. Everything from a Q-tip to medical tubing, the "nutrients" she's getting, etc. I highly doubt this is all generously being donated indefinitely.

Would it be a situation where the facility she's in orders everything she needs and never bill them for it? That care is going to bankrupt that facility if that is the case. There has to be SOMEONE footing the bill for all of the day to day necessities just to simply sustain her. It was my understanding there is no insurance - and even if there WAS, that it would cease at the time her death certificate was issued.

Whomever is footing the bill for this may be banking on the lawsuit for eventual payment...that's a HUGE risk to take, whomever it is.

A possibility in this case: It could possibly be a group of lawyers willing to invest in this case hoping to overturn the 250K cap in CA.

 

[ca2james]

http://www.renewamerica.com/columns/byrne/140201



This guy is just unbelievable. And of course there are no comments allowed to counter any of his claims. It's really no wonder NW refuses to believe Jahi is dead. She's got this MD assuring her it is so. Interesting, though, he does reference the video as being 3 weeks after brain death was declared, so if he is correct, the video in question is an old one.

I don't understand how an MD can publish medical statements that are patently untrue and still be allowed to keep his MD licence. In my head an MD who demonstrates this level of ignorance about ventilators and death is unfit to practice medicine.

Of course the mother wants to believe him because he is telling her what she wants to hear. That poor woman is being manipulated and twisted by the lawyer and this charlatan so that they can attain their own goals. While I disagree with the family's point of view and the choices they've made, they ddeserve so much better than to be used this way.

 

[ArianeEmory]

A possibility in this case: It could possibly be a group of lawyers willing to invest in this case hoping to overturn the 250K cap in CA.

This is my belief. Their lawyer is directly involved in that cause. I feel confident there are investors.

 

[Trino]

I'm just astounded. How much longer can this go on?

 

[Sonya610]

I'm just astounded. How much longer can this go on?

It will go on until the body's heart stops beating OR when the funds dry up.

Let us just hope this is not precedent setting.