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

[wvugurl26]

Bleeding is a real risk with any tonsillectomy. Let alone a complicated one.

My niece had a regular one earlier this spring. Her ENT has been doing these for 25+ years now. He has super strict post op instructions. The patient is to go directly home from the hospital and not go outside for two weeks. The only patient he's ever had bleed didn't follow those directions. He says it is the pressure changes from inside to out that cause the bleeding.

[justme]

As sad as the situation is, the more the mom talks the more I'm inclined to believe it was an unfortunate outcome than a mistake, though I'm sure we'll never know. They keep saying the hospital has talked to several nursing homes, but the hospital says they haven't heard from any facility. Family says they have the letter from the corner ok'ing a transfer, but hospital says they have yet to receive the letter. Not that I believe the hospital is infallible, but at this point I'm pretty confident the hospital knows a suit is coming and wouldn't straight up lie or prevent a transfer to get this situation out of their hospital.

[mollyanna58]

If a brain transplant was even possible, would the young girl be the same person her mother remembers? With a brain transplant, who would she 'belong' to - the mother who bore her or the mother/family of the person whose brain was transplanted?

The memories and personality of the brain transplanted would be that of the donor and not the girl.

That was the plot of a TV movie many years ago: "Who Is Julia"; beautiful woman's brain was transplanted into plain woman's body.

[Tennesseer]

Dec 31, 2013 13:20:26 GMT -5 mollyanna58 said:

If a brain transplant was even possible, would the young girl be the same person her mother remembers? With a brain transplant, who would she 'belong' to - the mother who bore her or the mother/family of the person whose brain was transplanted?

The memories and personality of the brain transplanted would be that of the donor and not the girl.

That was the plot of a TV movie many years ago: "Who Is Julia"; beautiful woman's brain was transplanted into plain woman's body.

So who was Julia?  Or did the writers let the viewers decide for themselves.  

[mollyanna58]

I don't think I watched the whole movie

[Tennesseer]

Dec 31, 2013 13:32:49 GMT -5 mollyanna58 said:

I don't think I watched the whole movie

From the reviews of the movie I just read,  you used your TV watching time wisely.  

[The Walk of the Penguin Mich]

Dec 31, 2013 11:58:57 GMT -5 justme said:

As sad as the situation is, the more the mom talks the more I'm inclined to believe it was an unfortunate outcome than a mistake, though I'm sure we'll never know. They keep saying the hospital has talked to several nursing homes, but the hospital says they haven't heard from any facility. Family says they have the letter from the corner ok'ing a transfer, but hospital says they have yet to receive the letter. Not that I believe the hospital is infallible, but at this point I'm pretty confident the hospital knows a suit is coming and wouldn't straight up lie or prevent a transfer to get this situation out of their hospital.

The ironic thing is that the longer that they keep the child on the respirator, the greater the likelihood of them not being able to get the real cause of the bleeding and it's not going to help any lawsuit.

I feel for the hospital because their hands are tied.  They can't say anything to the court of public opinion because of HIPAA compliance and apparently the mother won't sign a release.  So the hospital is going to be vilified, regardless of culpability of the problem.

The other thing that ticks me off is that they (the press included) keep calling this a simple tonsillectomy.  From what I understand, corrections for sleep apnea are way different from a 'simple tonsillectomy'.  

[wvugurl26]

Dec 31, 2013 14:27:16 GMT -5 The Walk of the Penguin Mich said:

Dec 31, 2013 11:58:57 GMT -5 justme said:

As sad as the situation is, the more the mom talks the more I'm inclined to believe it was an unfortunate outcome than a mistake, though I'm sure we'll never know. They keep saying the hospital has talked to several nursing homes, but the hospital says they haven't heard from any facility. Family says they have the letter from the corner ok'ing a transfer, but hospital says they have yet to receive the letter. Not that I believe the hospital is infallible, but at this point I'm pretty confident the hospital knows a suit is coming and wouldn't straight up lie or prevent a transfer to get this situation out of their hospital.

The ironic thing is that the longer that they keep the child on the respirator, the greater the likelihood of them not being able to get the real cause of the bleeding and it's not going to help any lawsuit.

I feel for the hospital because their hands are tied.  They can't say anything to the court of public opinion because of HIPAA compliance and apparently the mother won't sign a release.  So the hospital is going to be vilified, regardless of culpability of the problem.

The other thing that ticks me off is that they (the press included) keep calling this a simple tonsillectomy.  From what I understand, corrections for sleep apnea are way different from a 'simple tonsillectomy'.  

They are indeed two different animals. However, the press won't let that get in the way of a good soundbite.

[Deleted]

Wrong thread Tn.

[Tennesseer]

Dec 31, 2013 18:00:31 GMT -5 nutty said:

Wrong thread Tn.

Oooops!  Too many kids dying. Mea culpa.

[Deleted]

You are right though, too many children are passing on.

[achelois]

It is so sad that this situation is being turned into a circus. I cannot imagine any greater pain than that of losing a child, but the mother is very uneducated and/or in severe denial. 

I have been in healthcare for over 30 years and doing anesthesia for more than 20 of those years and have seen many of these surgeries in the course of my work. This absolutely was NOT a simple tonsillectomy. The tonsils and adenoids were removed and she had also a UPP (uvulopalatoplasty) in which the uvula was removed along with tissue from the roof of her mouth. She also had turbinates removed from her nose. 

This is is very serious and risky surgery. She was a planned ICU admit because of that. There are major blood vessels in that area and it is possible to lose a large amount of blood in a very short amount of time.   The girl came through the surgery ok. After surgery of this type it is very important that the patient lie quietly and not take anything by mouth, with the possible exception of a few ice chips. Anything that increases blood pressure or excessive movement in the mouth and throat should be avoided. Pain, activity, eating, vomiting all can lead to bleeding. 

I can can guarantee you that all nurses are aware of the possibility of lawsuits. Presumably most nurses will act immediately to care for the patients because they care about them, but even if there would be a nurse who did not--that nurse would provide care so he/she will be able to keep the nursing license and work and pay the bills

Staffing in ICU is generally 1:1 or 1:2 in the hospitals in which I have worked and California has better, state-mandated ratios than most places. There would have been a nurse right there at the bedside.

There were several tests done, including EEG and cerebral blood flow studies. These are the same tests that have to be done prior to organ harvesting from donors. The little girl is brain dead and will not come back from this.

Recently, in England, a young woman did have a simple tonsillectomy, was home from the hospital for a week, started bleeding and died.

Just because there is an adverse outcome doesn't automatically mean that there was negligence or malpractice.

[AgeOfEnlightenmentSCP]

I understand that all surgeries carry risk.  There's no "simple" surgery- I learned this from years of having a mother and sister who are RN's- one in the ICU, one with oncology / ER experience.  However, we ALL deserve a second opinion because otherwise there's an obvious conflict of interest on the part of the hospital and frankly their actions could be an effort to avoid liability by covering up mistakes.  The sooner they pull the plug and get this girl in the ground- the sooner any issues can be swept under the rug.  I think we need best practices for the industry that provide transparency and accountability in these cases.

[AgeOfEnlightenmentSCP]

Jan 1, 2014 19:17:57 GMT -5 achelois said:

It is so sad that this situation is being turned into a circus. I cannot imagine any greater pain than that of losing a child, but the mother is very uneducated and/or in severe denial. 

I have been in healthcare for over 30 years and doing anesthesia for more than 20 of those years and have seen many of these surgeries in the course of my work. This absolutely was NOT a simple tonsillectomy. The tonsils and adenoids were removed and she had also a UPP (uvulopalatoplasty) in which the uvula was removed along with tissue from the roof of her mouth. She also had turbinates removed from her nose. 

This is is very serious and risky surgery. She was a planned ICU admit because of that. There are major blood vessels in that area and it is possible to lose a large amount of blood in a very short amount of time.   The girl came through the surgery ok. After surgery of this type it is very important that the patient lie quietly and not take anything by mouth, with the possible exception of a few ice chips. Anything that increases blood pressure or excessive movement in the mouth and throat should be avoided. Pain, activity, eating, vomiting all can lead to bleeding. 

I can can guarantee you that all nurses are aware of the possibility of lawsuits. Presumably most nurses will act immediately to care for the patients because they care about them, but even if there would be a nurse who did not--that nurse would provide care so he/she will be able to keep the nursing license and work and pay the bills

Staffing in ICU is generally 1:1 or 1:2 in the hospitals in which I have worked and California has better, state-mandated ratios than most places. There would have been a nurse right there at the bedside.

There were several tests done, including EEG and cerebral blood flow studies. These are the same tests that have to be done prior to organ harvesting from donors. The little girl is brain dead and will not come back from this.

Recently, in England, a young woman did have a simple tonsillectomy, was home from the hospital for a week, started bleeding and died.

Just because there is an adverse outcome doesn't automatically mean that there was negligence or malpractice.

Wholeheartedly agree.  Medicine is still more art than science sometimes.  Nothing is 100% in surgery- once you start messing with the human body.  That being said, though, the people in total control of the situation ought not be the people that potentially screwed up.  I don't think she's coming back- that isn't my reasoning for suggesting they get a second opinion- my motivation is getting a second look at the situation by a disinterested third party so if there were any mistakes made, the family has a qualified medical professional's opinion on the record.

[wvugurl26]

Jan 2, 2014 8:24:21 GMT -5 AgeOfEnlightenmentSCP said:

I understand that all surgeries carry risk.  There's no "simple" surgery- I learned this from years of having a mother and sister who are RN's- one in the ICU, one with oncology / ER experience.  However, we ALL deserve a second opinion because otherwise there's an obvious conflict of interest on the part of the hospital and frankly their actions could be an effort to avoid liability by covering up mistakes.  The sooner they pull the plug and get this girl in the ground- the sooner any issues can be swept under the rug.  I think we need best practices for the industry that provide transparency and accountability in these cases.

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

[AgeOfEnlightenmentSCP]

Jan 2, 2014 8:42:35 GMT -5 wvugurl26 said:

Jan 2, 2014 8:24:21 GMT -5 AgeOfEnlightenmentSCP said:

I understand that all surgeries carry risk.  There's no "simple" surgery- I learned this from years of having a mother and sister who are RN's- one in the ICU, one with oncology / ER experience.  However, we ALL deserve a second opinion because otherwise there's an obvious conflict of interest on the part of the hospital and frankly their actions could be an effort to avoid liability by covering up mistakes.  The sooner they pull the plug and get this girl in the ground- the sooner any issues can be swept under the rug.  I think we need best practices for the industry that provide transparency and accountability in these cases.

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

[thyme4change]

Dec 31, 2013 11:58:57 GMT -5 justme said:

As sad as the situation is, the more the mom talks the more I'm inclined to believe it was an unfortunate outcome than a mistake, though I'm sure we'll never know. They keep saying the hospital has talked to several nursing homes, but the hospital says they haven't heard from any facility. Family says they have the letter from the corner ok'ing a transfer, but hospital says they have yet to receive the letter. Not that I believe the hospital is infallible, but at this point I'm pretty confident the hospital knows a suit is coming and wouldn't straight up lie or prevent a transfer to get this situation out of their hospital.

I agree.  In fact, I would suspect the hospital would love to get this child out of their facility, so they can get back to business.  If they can get her legally transported, then when the family does accept that she is dead - the hospital won't be the final evil.  They will have a second facility backing them up.

[taz157]

Jan 2, 2014 9:05:55 GMT -5 AgeOfEnlightenmentSCP said:

Jan 2, 2014 8:42:35 GMT -5 wvugurl26 said:

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

I thought someone else not affiliated with the hospital has gone in and declared her brain dead too...

[wvugurl26]

I don't know for sure but haven't others already checked on this girl? Several care facilities have refused to take her so I would assume they checked her out? I see the wisdom of having someone else outside the hospital verify the brain dead status but shouldn't that be standard protocol?

[thyme4change]

Jan 2, 2014 9:05:55 GMT -5 AgeOfEnlightenmentSCP said:

Jan 2, 2014 8:42:35 GMT -5 wvugurl26 said:

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

I think they have had 6 different doctors in there - half of them not affiliated with the hospital.  Second opinion is fine.  Third opinion is fine.  But this couple has had a litany of doctors agree, except one GP with no surgical experience, who isn't denying any of the tests, but challenging the definition of "brain dead."  

[The Captain]

Several independent doctors have also declared her brain dead.

Before she could be transferred to a long-term acute care facility they would have to operate on her to surgically attach a breathing tube and insert a feeding tube (tracheostomy and gastrostomy).  The hospital she is at states it will not perform surgeries on a dead person.

When will a judge put a stop to the circus this has become?

[AgeOfEnlightenmentSCP]

Jan 2, 2014 9:12:27 GMT -5 thyme4change said:

Jan 2, 2014 9:05:55 GMT -5 AgeOfEnlightenmentSCP said:

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

I think they have had 6 different doctors in there - half of them not affiliated with the hospital.  Second opinion is fine.  Third opinion is fine.  But this couple has had a litany of doctors agree, except one GP with no surgical experience, who isn't denying any of the tests, but challenging the definition of "brain dead."  

Yeah- they're just in strong denial.  I didn't know that half the doctors were unaffiliated with the hospital- guess I missed that.  I can certainly relate to their denial.  It's a very hard thing that has happened to them.  We have a family member who will not acknowledge her husband's advanced dementia.  She maintains his doctor has only said he has 'mild cognitive decline' and that he is 'forgetful' or gets 'confused sometimes'.  The reality is that he is just barely this side of drooling in a chair.  This family is clearly trying to cling to the hope that their daughter who has died might somehow be 'revived' and they don't understand, or cannot accept that it's just not going to happen.  I don't see where the "hate" comes in.  I guess the race baiters will never miss an opportunity to exploit a situation to divide us all along racial lines and line their own pockets, or satisfy their need to tear down our country and our culture.

[wvugurl26]

It is an awful thing for sure. And if the family admits she is brain dead, well they are giving up and admitting she's not going to wake up. I'm sure that is a very hard thing to do especially when it concerns your child.

[mmhmm]

Jan 2, 2014 9:05:55 GMT -5 AgeOfEnlightenmentSCP said:

Jan 2, 2014 8:42:35 GMT -5 wvugurl26 said:

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

There have been outside opinions, paul.  All professionals have verified the child is brain dead, including the latest from the Chief of Pediatric Neurology at Stanford University.

[mmhmm]

Jan 2, 2014 10:36:59 GMT -5 AgeOfEnlightenmentSCP said:

Jan 2, 2014 9:12:27 GMT -5 thyme4change said:

I think they have had 6 different doctors in there - half of them not affiliated with the hospital.  Second opinion is fine.  Third opinion is fine.  But this couple has had a litany of doctors agree, except one GP with no surgical experience, who isn't denying any of the tests, but challenging the definition of "brain dead."  

Yeah- they're just in strong denial.  I didn't know that half the doctors were unaffiliated with the hospital- guess I missed that.  I can certainly relate to their denial.  It's a very hard thing that has happened to them.  We have a family member who will not acknowledge her husband's advanced dementia.  She maintains his doctor has only said he has 'mild cognitive decline' and that he is 'forgetful' or gets 'confused sometimes'.  The reality is that he is just barely this side of drooling in a chair.  This family is clearly trying to cling to the hope that their daughter who has died might somehow be 'revived' and they don't understand, or cannot accept that it's just not going to happen.  I don't see where the "hate" comes in.  I guess the race baiters will never miss an opportunity to exploit a situation to divide us all along racial lines and line their own pockets, or satisfy their need to tear down our country and our culture.

Perhaps, paul, you need to read the comments of idiots reacting to the article in the OP.  That's where the "hate" came in.  There were some pretty nasty comments made.

[zibazinski]

No thanks. Don't need to go there. I watched and lived through the Shiavo circus. Horrible pictures of her all over, just sad. The ONLY good thing to come out of that was that people made sure their living wills and what not were in order as much as possible. Me, too. 

[Wisconsin Beth]

Dec 31, 2013 13:20:26 GMT -5 mollyanna58 said:

If a brain transplant was even possible, would the young girl be the same person her mother remembers? With a brain transplant, who would she 'belong' to - the mother who bore her or the mother/family of the person whose brain was transplanted?

The memories and personality of the brain transplanted would be that of the donor and not the girl.

That was the plot of a TV movie many years ago: "Who Is Julia"; beautiful woman's brain was transplanted into plain woman's body.

Kay Hooper did something similar in one of her books.  Except it was done via psychic availabilities and not physically.  And there was a serial killer involved... 

[The Walk of the Penguin Mich]

Jan 2, 2014 9:05:55 GMT -5 AgeOfEnlightenmentSCP said:

Jan 2, 2014 8:42:35 GMT -5 wvugurl26 said:

From what I understand, when the plug is pulled an autopsy will be done so we can learn what did go wrong. And that is the only way to know for sure whether the hospital staff made a mistake or if it was one of those unfortunate things that just happens sometimes.

Fair point.  I just think that the people that potentially screwed up ought not be the ones to declare her dead.  It's likely- I think it's probably legit, but let's get someone else in there before the body cools to take a look.

Not only that....the longer the mother drags this out, the more difficult it will be to assign fault.

There have been at least 3 specialists brought in, 2 of them not associated with the hospital.  They all concur.  How many more should be brought in?

[Deleted]

I always wonder when people get TV time if they like it. I would be horrified at being in the news, no way. It's at the point that for the mom to back down now would be difficult if she likes the coverage. If someone would sit down with her without the hysteria and tried to explain, would she come on the news and say my bad, I misunderstood, the doctors are right. I doubt it.

[Tennesseer]

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.