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

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The comments are much more interesting than the article. JMHO

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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

FWIW, I am a caucasian of European descent and I don't trust 'the System'. I had a cousin who died after 'routine surgery'. They didn't tell him to stop his blood thinners - then left him alone for 4 HOURS after surgery.

I had nurses force bottle feeding on my 34 week preemie because 'preemies don't nurse well'. She latched on fine and refused bottles after that.

My dying mother in ICU (on a vent) wanted to go home to die. The nurses said that they would arrange hospice. They 'unplugged' her assuming she would only last a couple of hours. They hadn't even called hospice - I found this out at 4:00 am the next morning. Mom went home the next day and lived for a week.

I saw a pediatrician refuse to treat a toddler with an ear infection who had a paper 'Medical Card' - but wasn't in the 'system'.

I have seen all this and more - just in the last 10 years.

I pray for all involved in this situation but I believe 'the system' itself is to blame.

jmo
 
FWIW, I am a caucasian of European descent and I don't trust 'the System'. I had a cousin who died after 'routine surgery'. They didn't tell him to stop his blood thinners - then left him alone for 4 HOURS after surgery.

I had nurses force bottle feeding on my 34 week preemie because 'preemies don't nurse well'. She latched on fine and refused bottles after that.

My dying mother in ICU (on a vent) wanted to go home to die. The nurses said that they would arrange hospice. They 'unplugged' her assuming she would only last a couple of hours. They hadn't even called hospice - I found this out at 4:00 am the next morning. Mom went home the next day and lived for a week.

I saw a pediatrician refuse to treat a toddler with an ear infection who had a paper 'Medical Card' - but wasn't in the 'system'.

I have seen all this and more - just in the last 10 years.

I pray for all involved in this situation but I believe 'the system' itself is to blame.

jmo

First, I'm very, very sorry and sad that you have developed such a global distrust of the "medical system". That is a difficult position for anyone to be in to be able to effectively advocate for themselves, or their family members. Being a health care professional, I know there is much more to the personal stories you have shared, than just a very limited, one sided interpretation of what you think may have happened.

For example, it is possible that your 34 week daughter had a very serious episode of hypoglycemia discovered as a result of periodic glucose testing. Preemies are vulnerable to this, and there are standing protocols in nurseries to feed immediately to prevent having to start an IV, etc. Sometimes the protocols are to feed sterile sugar water, to immediately get the blood glucose up. And yes, this might be done without offering the infant to breast feed, particularly if the baby was already sluggish from low glucose. I have seen and heard many stories about moms being incensed and angry that their baby was offered a bottle-- and in years past, definitely healthy term babies were offered bottles before breast. But not in the past "many" years has this been protocol anywhere. In fact, there are policies and protocols in place preventing this in nearly every hospital. So that is why I say that there is probably much more to the situation medically than just a "rogue" nurse who wanted to take the easy way out and give a neonate a bottle, rather than offer the breast. We only have your side of the story, respectfully.

I think it's important to point out that there are at least 2 sides to every story. I believe that there is much, much more information to each of the situations you describe, just as there is much, much more to Jahi McMath's story than only what has been presented to the public by the family and their attorney. I can believe that JM's family doesn't trust the medical "system" due to their particular set of social circumstances, and personalities. But I am also unwilling to say that the "hospital" did absolutely everything "wrong" in the care of JM. We have only ONE side of the story.

The health care industry as a whole isn't just waiting around for the next patient and family they can conspire to "victimize". Believe it or not, the health care system, and nearly everyone who works in it, are there to help people the best they can. Every day of the week. 24/ 7/ 365.

Even patients and families who are "difficult" to work with. IMO.

A little OT, but I wanted to add:

In fact, regarding breast feeding, things have swung so far medically in favor of breast feeding that there are more commonly patient complaints that women who WANT to bottle feed, are complaining that the nurses (and doctors) are "forcing" them to breast feed! I work in one hospital with a predominantly low income population, with limited education. Many of these women walk in the hospital saying "don't even ask me to try breast feeding, because I'm not going to do it." The nurses are in a terrible quandary, because their policies require breast feeding as a "default" position, and they have to document how long after delivery it is until the baby is put to breast, time spent in counseling and teaching, etc. All those areas of documentation are part of "inspection" criteria. There has been discussion about what to do about women who don't want to breast feed, because these women skew the Quality Assurance indicators, and make "the hospital" look bad on inspection criteria. So no, I highly doubt that rogue nurses are just bottle feeding babies for convenience anymore. That is just not the reality of where the situation is. A n OB nurse would be reprimanded for doing something like that. Bottles of formula are almost considered "medications" nowadays--given if needed, but not just for convenience. Sometimes a doc order is required. No more do you see pallets of baby formula laying around the OB floors. Yes, it is available, but new moms are not sent home with gallons of formula anymore.
 
First, I'm very, very sorry and sad that you have developed such a global distrust of the "medical system". That is a difficult position for anyone to be in to be able to effectively advocate for themselves, or their family members. Being a health care professional, I know there is much more to the personal stories you have shared, than just a very limited, one sided interpretation of what you think may have happened.

For example, it is possible that your 34 week daughter had a very serious episode of hypoglycemia discovered as a result of periodic glucose testing. Preemies are vulnerable to this, and there are standing protocols in nurseries to feed immediately to prevent having to start an IV, etc. Sometimes the protocols are to feed sterile sugar water, to immediately get the blood glucose up. And yes, this might be done without offering the infant to breast feed, particularly if the baby was already sluggish from low glucose. I have seen and heard many stories about moms being incensed and angry that their baby was offered a bottle-- and in years past, definitely healthy term babies were offered bottles before breast. But not in the past "many" years has this been protocol anywhere. In fact, there are policies and protocols in place preventing this in nearly every hospital. So that is why I say that there is probably much more to the situation medically than just a "rogue" nurse who wanted to take the easy way out and give a neonate a bottle, rather than offer the breast. We only have your side of the story, respectfully.

I think it's important to point out that there are at least 2 sides to every story. I believe that there is much, much more information to each of the situations you describe, just as there is much, much more to Jahi McMath's story than only what has been presented to the public by the family and their attorney. I can believe that JM's family doesn't trust the medical "system" due to their particular set of social circumstances, and personalities. But I am also unwilling to say that the "hospital" did absolutely everything "wrong" in the care of JM. We have only ONE side of the story.

The health care industry as a whole isn't just waiting around for the next patient and family they can conspire to "victimize". Believe it or not, the health care system, and nearly everyone who works in it, are there to help people the best they can. Every day of the week. 24/ 7/ 365.

Even patients and families who are "difficult" to work with. IMO.

A little OT, but I wanted to add:

In fact, regarding breast feeding, things have swung so far medically in favor of breast feeding that there are more commonly patient complaints that women who WANT to bottle feed, are complaining that the nurses (and doctors) are "forcing" them to breast feed! I work in one hospital with a predominantly low income population, with limited education. Many of these women walk in the hospital saying "don't even ask me to try breast feeding, because I'm not going to do it." The nurses are in a terrible quandary, because their policies require breast feeding as a "default" position, and they have to document how long after delivery it is until the baby is put to breast, time spent in counseling and teaching, etc. All those areas of documentation are part of "inspection" criteria. There has been discussion about what to do about women who don't want to breast feed, because these women skew the Quality Assurance indicators, and make "the hospital" look bad on inspection criteria. So no, I highly doubt that rogue nurses are just bottle feeding babies for convenience anymore. That is just not the reality of where the situation is. A n OB nurse would be reprimanded for doing something like that. Bottles of formula are almost considered "medications" nowadays--given if needed, but not just for convenience. Sometimes a doc order is required. No more do you see pallets of baby formula laying around the OB floors. Yes, it is available, but new moms are not sent home with gallons of formula anymore.

BBM: This!
 
So this just means that Dolan is dismissing current but he will be able to submit the suit again in the future if he wants too. JMO

Well, yeah, technically. But there's always a reason behind deciding to dismiss a pending lawsuit.

jmo
 
Well, yeah, technically. But there's always a reason behind deciding to dismiss a pending lawsuit.

jmo

Dumb non-lawyer question: could he bring the suit again after/ if the $250k cap was lifted? Or are we talking about apples and oranges? I admittedly don't know what the pending lawsuit was.
 
Dumb non-lawyer question: could he bring the suit again after/ if the $250k cap was lifted? Or are we talking about apples and oranges? I admittedly don't know what the pending lawsuit was.

Apples and oranges, imo. He can file the medmal/wrongful death suit any time before the SOL expires (usually 2 years). The Fed case has to do with constitutional issues surrounding the termination of mechanical support of the body.

all jmo
 
Advances in the treatment of cancer and infection and the advent of minimally-invasive surgical procedures have led to an expectation of the miraculous. Any adverse outcome — even when it can be predicted — is viewed as a failure. But death is a natural part of the process of living. No one lives forever.

There is something to be said for dying with dignity. And “heroic measures” that prolong a person’s physical existence when there is no meaningful hope for recovery (measures often demanded by grieving family members against the best medical advice) can rob patients of that dignity.

http://savannahnow.com/column/2014-02-02/murphy-theres-something-be-said-dying-dignity#.Uu_7tfl_vuW
 
CHO tonsillectomy outcomes reminds me of the old Dudley Moore movie "Crazy People" where he, an ex advertising executive, and his fellow co-patients at on a psychiatric ward are coming up with advertising slogans that emphasize truth. The one for United Airlines (that reminds me of hospital procedures), "Most of our passengers get there alive."
 
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!)
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Thank you K_Z for all your info..One thing I'm stuck on. Dr.G. has said once a person dies with brain recieving no blood the brain liquifies, she has a hard time removing brain (sometimes) as it is liquid and falls apart during autopsy. The Body Farm (interesting reads) says without embalming the body will leak these fluids through nose, mouth, ears, and other convenient body parts. Would this be happen ing with JM.? I should think it would. I also read in one report from I believe atty. that she isnt being fed ie:Jevity or such, there was a problem. I'm sure I know what the problem was. This is all taken proper care of by embalmer. Would she be leaking? They are giving her electrolytes etc. thru IV.'s..I could never watch my childs body go thru this..TIA..:tyou:
 
Good questions, Nore. Ones I've had as well. Some medical folk on this board use the term "deteriorating" but say that isn't the same as "decaying" or "decomposition," which they say is not happening because the heart is still pumping and O2 and CO2 are still being exchanged (due to ventilation machinery) and thus cellular death has either not occurred or is still minimal, with the exception of the brain.

Other medical folk in the media claim that Jahi's body is slowly decaying, and that nothing can ultimately stop it.

To me there's much confusion around the terms.

Is decay the same as decomposition?

Is deterioration a first phase towards decay or something else entirely?
 
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Thank you K_Z for all your info..One thing I'm stuck on. Dr.G. has said once a person dies with brain recieving no blood the brain liquifies, she has a hard time removing brain (sometimes) as it is liquid and falls apart during autopsy. The Body Farm (interesting reads) says without embalming the body will leak these fluids through nose, mouth, ears, and other convenient body parts. Would this be happen ing with JM.? I should think it would. I also read in one report from I believe atty. that she isnt being fed ie:Jevity or such, there was a problem. I'm sure I know what the problem was. This is all taken proper care of by embalmer. Would she be leaking? They are giving her electrolytes etc. thru IV.'s..I could never watch my childs body go thru this..TIA..:tyou:

Good questions, Nore. Ones I've had as well. Some medical folk on this board use the term "deteriorating" but say that isn't the same as "decaying" or "decomposition," which they say is not happening because the heart is still pumping and O2 and CO2 are still being exchanged (due to ventilation machinery) and thus cellular death has either not occurred or is still minimal, with the exception of the brain.

Other medical folk in the media claim that Jahi's body is slowly decaying, and that nothing can ultimately stop it.

To me there's much confusion around the terms.

Is decay the same as decomposition?

Is deterioration a first phase towards decay or something else entirely?

Decomposition is very different from deterioration. Decomposition occurs when there is no circulation, and follows well defined stages. It is more accurate to describe the changes of a brain dead person with cardiac function and circulation (however altered) as progressive deterioration, rather than decomposition. Jahi's brain (composed of fatty neural tissue, without much connective tissue) has likely undergone decomposition, as there is no circulation. The rest of her body has circulation, however altered, and is experiencing deterioration.

Animal decomposition

Decomposition begins at the moment of death, caused by two factors: autolysis, the breaking down of tissues by the body's own internal chemicals and enzymes, and putrefaction, the breakdown of tissues by bacteria. These processes release gases that are the chief source of the unmistakably putrid odor of decaying animal tissue.

Stages of decomposition

Five general stages are used to describe the process of decomposition in vertebrate animals: Fresh, Bloat, Active and Advanced Decay, and Dry/Remains.[4] The general stages of decomposition are coupled with two stages of chemical decomposition: autolysis and putrefaction.[5] These two stages contribute to the chemical process of decomposition, which breaks down the main components of the body.

Decomposition - Wikipedia, the free encyclopedia

As far as what is going on with Jahi's brain, if I understand correctly, the meninges (the tissues enveloping the brain) would contain the liquefying tissues unless there were some kind of infection or trauma that would cause a leak or breach in the meninges. As her body is probably receiving gentle care in a bed, I'd think the meninges are intact, probably. If Joypath comes around, perhaps she would address this issue as to how long meninges will remain intact in the absence of infection or trauma. I'm sure not an expert in this area!

As far as whether Jahi's body is being fed tube feed, I have no idea. I will say that Jevity is about 2-4 times (or more!) as expensive as mundane old Ensure or Boost, that you can buy at any warehouse club, or pharmacy, or Target/ Walmart. Her body may, or may not be capable of digesting or absorbing tube feed. Her body may, or may not be receiving peripheral IV hyperal, which is limited in the amount of dextrose that can be infused, versus "central line" hyperal/ TPN, which can tolerate a higher sugar content. If she is getting tube feed, it is likely her body cannot tolerate enough to meet a significant amount of daily calories. (And then there is the high-osmolar diarrhea from tube feed with a high sugar content, with resultant skin breakdown, and fungal "diaper rash" infections, if her gut is functional enough to tolerate a lot of tube feed.)

Either way, her body is in a state of catabolism-- not building tissue, but destroying tissue. I suspect she has lost a significant amount of weight since Dec 9, 2013.

Catabolism - Wikipedia, the free encyclopedia

If it helps with understanding between decomposition and deterioration, imagine putting a tourniquet around an arm. No arterial or venous circulation possible. Within a few days, the limb would die, and decompose. The REST of the body would be seriously affected by the chemical products of the tourniquet, and decomposition of the limb, but the rest of the body would not immediately turn black and die. Diabetics sometimes have "dead toes" or dead feet, while the rest of the body has circulation.

In this pic, the tips of the fingers are dead from frostbite, with no circulation, while the rest of the hand has some degree of altered circulation.

http://img.medscape.com/pi/features/slideshow-slide/injuries-cold-weather/fig1.jpg

If Jahi's body experiences prolonged poor circulation to the periphery (from low BP, clots, or vasoconstriction, etc), she could have dead areas of her periphery. However, she was only 13, without any systemic disease that would compromise circulation chronically, I think it is less likely she would have dead areas in her periphery. I do think it's possible/ probable that she has markedly decreased hydration to the extremities (tips of fingers, toes, tip of nose, ears, etc). This might appear as shriveled, or wizened areas (in addition to loss of fat below the skin).
 
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Thank you K_Z for all your info..One thing I'm stuck on. Dr.G. has said once a person dies with brain recieving no blood the brain liquifies, she has a hard time removing brain (sometimes) as it is liquid and falls apart during autopsy. The Body Farm (interesting reads) says without embalming the body will leak these fluids through nose, mouth, ears, and other convenient body parts. Would this be happen ing with JM.? I should think it would. I also read in one report from I believe atty. that she isnt being fed ie:Jevity or such, there was a problem. I'm sure I know what the problem was. This is all taken proper care of by embalmer. Would she be leaking? They are giving her electrolytes etc. thru IV.'s..I could never watch my childs body go thru this..TIA..:tyou:

Sorry to trouble you, but could you or someone else provide a link to the comments of "Dr. G" referenced in sentence two above? I'm looking for a way to help a friend understand why I'm so insistent that there is no recovery from brain death and that pretty much would put in pretty raw terms. It sounds similar but not identical to something else I had read. Thank you.
 
I may be the only one, but I can understand/sympathize with the family. I can just imagine having my lil one go in for a "routine surgery" and never wake up. I'm sorry, but I would want to hold on my child forever. I believe in miracles and God and that He could heal my child. I don't know......I just feel for them. I wouldn't want to let go. But that's just me.
 
I may be the only one, but I can understand/sympathize with the family. I can just imagine having my lil one go in for a "routine surgery" and never wake up. I'm sorry, but I would want to hold on my child forever. I believe in miracles and God and that He could heal my child. I don't know......I just feel for them. I wouldn't want to let go. But that's just me.

Jahi's surgery was not "routine". Besides a tonsillectomy, Jahi's surgery included other procedures. The scope of the surgery has been discussed several times, and medical professionals have described in detail the delicate nature of the surgery. Additionally, Jahi might have had underlying medical conditions that put her at greater risk than a well child undergoing the same surgical procedure.
 
FYI ...

We're five days shy of TWO MONTH'S post surgery:
-- Dec. 9, 2013: [JM] undergoes tonsil surgery and two other procedures to remove throat and nasal tissue to treat sleep apnea at [CHO]. She reportedly awakes from surgery but later suffers complications, goes into cardiac arrest and is placed on a ventilator.
http://www.contracostatimes.com/new...ine-events-case-brain-dead-oakland?source=pkg
And, seven days shy of TWO MONTH'S post declared dead date:
-- Dec. 11: Doctors declare [JM] legally brain dead. [JM]'s family asks the hospital to keep her on a ventilator, believing she will recover.
http://www.contracostatimes.com/news/ci_24852092/jahi-mcmath-timeline-events-case-brain-dead-oakland?source=pkg

:thud: :notgood: :silenced: :what: :stop: :pcguru: :viking: :whiteflag:
 
I may be the only one, but I can understand/sympathize with the family. I can just imagine having my lil one go in for a "routine surgery" and never wake up. I'm sorry, but I would want to hold on my child forever. I believe in miracles and God and that He could heal my child. I don't know......I just feel for them. I wouldn't want to let go. But that's just me.

As evidence of how 'not routine' her surgery was- the Peds ICU stay was pre-arranged, before she ever went to surgery. But there are AMPLE posts about this very aspect.
 
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