Family wants to keep life support for girl brain dead after tonsil surgery #2

[SophieRose]

I would hope someone (namely the grandma that is a nurse) is helping and reminding the mom to move the limbs so they are not atrophying.

I think that's why the family was asking for a doctor's order for therapy.

 

[jjenny]

http://robertaconnor.blogspot.com/2011/02/shewmon-brain-or-no-brain-person-is.html

Okay so here's a brain dead boy who got puberty (Transcript of Dr Shewmon speaking




If he survived for only two months and if Shewmon met him only once it is not clear to me how he could verify that pubertal changes began during the brain dead state.

But this was in California so it might be worth asking Shewmon if this facility still exists.

Yea, if some skilled nursing facility in Ca took in a brain patient before, I wonder why this family can't seem to find any.
Has the laws changed since that patient was taken into nursing facility?

 

[jjenny]

To do it in flight?

They can't do it at the hospital.

Where are they going to fly her? The New York facility doesn't even have an inpatient facility completed. It's still under construction.

 

[BeginnersLuck]

and following this incredible story.

I know this post is too long so I will try to post as I go and break it up a bit but I feel like I have to weigh in.

Correct me if I am wrong but has this been the first case where a brain dead person has been ordered by the courts to keep the ventilator support going?

I am trying to be objective and see both sides. I work in a hospital in medical records so I read and transcribe medical reports all day so I have an idea what is going but only enough knowledge to be dangerous. :scared:

My first question (I am not sure if we will ever know) is did this surgeon spell out the risks to Jani's mother verbally in language she could understand. In other words informed consent. I think it is required for the surgeon or a member of their staff to do this. I do believe I saw the name of the surgeon on some site but I can't locate it. I know that informed consent does not cover negligence if that happened but surely the mother knew with a complicated surgery that her daughter could possibly have an unforseen outcome and have it clearly explained to her what those risks were.

I do hope that there is a thorough investigation of what took place from the time she showed up at the hospital to OR, Recovery Room and PICU of how it all went down. Hospitals have quality assurance and if someone dropped the ball I would think they want to figure out how to prevent in the future and let anyone on the staff who displayed incompetence or negligence that day be called on the carpet. Was it one thing or a series of events that went wrong?

If it were circumstances beyond anyone's control (like she had clotting problem that was not picked up on her preop labs) and they did their best and followed all their protocols I would want to know that also. I believe that no hospital wants to lose a patient or is deliberate in messing up. But they are human and mistakes can happen. They just need to find out if was negligence or a situation they could not get under control.

I am trying to figure out why the nurses would let the family members suction a patient after such a surgery with numerous stitches and cauterization in the throat which is hello - the airway of a patient right from the OR. Or did the family take it upon themselves to do this. Were the nurses in attendance or were they leaving the room. So many questions.

What saddens me is when I get on twitter or the CNN site, etc. and read how they are trying to "kill Jani" and they are heartless. I agree the Singer dude is callous in his communication and he is the worst mouthpiece the hospital could have. He does them no favors. But I don't believe for one minute they are trying to kill this child. I don't think they thought that way on the day of her surgery. Something went terribly wrong yes, but deliberate, I don't think so.

Now Jani's mother is saying the hospital is cruel for not feeding her. Have their been cases of feeding a brain dead patient in a hospital or even in long term care. I can only imagine it is frought with problems and complications but I would think at some point if they continue to keep her systems going with vent they will have to look at nutrition?

I feel the mother is taking a very strong stance insisting they to ignore their ethical standards and consider her child as very much alive with all services that can be provided to her. I also imagine she is aksing for the hospital to eat those costs because of their screw-up and will sue for them for Jani's long term care on the vent if she does make it to the New York facility. I don't think it is for personal gain, though. More like she has a cause, a noble one at that and people will get behind her because this is a child and devoted mother and you cannot put a price on a precious child's life. And I completely understand her if she truly feels Jani is alive and God will spark her brain, miracles, faith and all that.

We also need to have a word for those who are brain dead on ventilators. It is insulting to Jani's mother to call her deceased or the body. Is there such a word?

When she says that she would be a horrible mother if she let them pull the plug I can sense that for her a good mother would never agree to it no matter what the experts say about her baby being gone. It says something about all those mom who made that painful decision to let go, I guess they are awful moms who did not fight hard enough and agreed to turn off the vent. Jahi's mom may became a national hero and an inspiration for other mothers to do the same.

Welcome!!!!!

Unfortunately, a lot of your questions about what actually transpired cannot be answered because we have only heard the families accounts of events from the media. I am sure they were in shock when this all happened. Unless there is a court case, we may never see the medical records or here the hospitals side of the events that day.

Social media can be very cruel, I learned that when following my first case. I prefer this forum much better. We have great moderators here that try and make sure we all behave. :floorlaugh:

There are so many people that have given the mother false hope IMO, and she is in denial. The general public is not well informed either and this is why I believe the hospital is using the words they are when they refer to Jahi. They IMO, have to be honest and blunt at this point because there are so many that really think that Jahi may just "wake up".

Because brain death is legally and medically considered death then it is important to not start a precedence by this case and the media attention it has received. The public and the family need to be well informed on this issue.

 

[MsSeal]

I find the New York facility so dicey.

Jahi would be their first inpatient. Are they equipped to manage a ventilator? Do they have staff that can maintain it. Do they have a back up vent in case it fails. I guess they plan to have the respiratory staff take care of it. The guy who fixes the toilets can't be doing that.

 

[MsSeal]

Thank you Beginner's luck.

When I heard that quote "dead,dead, dead" I wondered if it was because the mom was insisting that Jahi was alive and they kept repeating it hoping she would understand what it meant to be brain dead. It may have come across as insensitive to her because she did not see her child as being dead.at.all.

 

[BeginnersLuck]

I find the New York facility so dicey.

Jahi would be their first inpatient. Are they equipped to manage a ventilator? Do they have staff that can maintain it. Do they have a back up vent in case it fails. I guess they plan to have the respiratory staff take care of it. The guy who fixes the toilets can't be doing that.

The NY facility is just a outpatient rehab. They don't have any of these things that are needed. They are building a home for I believe 8 long term residents, but from what I have read, it is not for residents that would need the care that Jahi would need.

I honestly don't know what they are thinking by saying they will take her or how they think they will be able to meet her needs. It appears that this is all being stated without a lot of thought put into "how" it will get done.

 

[Linda7NJ]

Please don't take it wrong because i respect your opinion and you and I have often posted on the same threads and never had any issues. But the source of this is Jahi's mom, who sees things only as she wants to see them and disregards facts of the matter. I am sure that a lot of the hospital staff comments have been taken out of context, events exaggerated along with reporting of things that simply are not true or not possible.

I respect you too. No problemo here

I agree you could be 100% correct and it could all be exaggerated due to her deep denial or faith or whatever causes her to believe as she does. ....or maybe it's half true? I have no idea. I just think she has a legal right to due process, to advocate for her child and if this is what she wants, she has a right to fight for it.

I wouldn't trade places with her for anything in the world.

 

[Steft50]

I find the New York facility so dicey.

Jahi would be their first inpatient. Are they equipped to manage a ventilator? Do they have staff that can maintain it. Do they have a back up vent in case it fails. I guess they plan to have the respiratory staff take care of it. The guy who fixes the toilets can't be doing that.

This New York in patient facility isn't even completed yet, they were aiming for this past August but they are still asking for donations.

http://www.nbli.org/assets/pdfs/brendanHouseFlyer2013.pdf

 

[Roxye]

As I said earlier in the first thread, my son Nikel went in for almost the same procedure as Jani.

Here's a run down. Nikel was 11, still wetting the bed because he slept so heavy. He was falling asleep in class even though he went to bed at 8.30 every night and got woke up at 6. His teachers said he was extremely smart, yet lethargic. Tested well above average, but still scored bad in day to day testing. I'll be honest, my Nikel was about 20 pounds overweight at this point.

His doctor sent us to Vanderbilt Children's Hospital. We went through an exam, then another exam, then a sleep study. Then we went through another exam, that led to his adenoid/tonsillectomy removal surgery. The day of the surgery did NOT go well. I was one pissed Mama by the end of it... BUT!! That was because of intake, NOT because of the care my child received once back in the OR intake.

Once in the back, I had no less then 3 nurses explain to me the risks we were taking. I talked to two doctors telling me that while the risk was minimal, it was still a risk. I was also reminded, by myself, what Nikel would deal with if he didn't have the surgery. Peeing in bed for an 11 year old is demoralizing, no sleep overs, no camping trips. Falling asleep in class had led to bully for him. He would almost cry every morning because he didn't want to go to school to deal with these things.

I knew there was a chance my son could die. But I also knew it was a chance for my son to live. I mean REALLY live. No more bed-wetting that hurt his self esteem, no more bullying because he was falling asleep in class.

As a parent you weigh those options. I chose correctly. I hate to think of a parent that makes the choice and it ends up being the wrong one.

I took Nikel home THE SAME DAY as his surgery. I was awake for THREE days, he slept the entire time except for meds and the poweraid I shoved down him.

I CAN'T imagine what this family is going through. If it were my Nikel, I know what I would have done. I would have donated my son's organs to people who could have made his life worthwhile. I would want his memory and his spirit to move beyond.

Maybe they aren't there yet. Maybe we need to give a little bit more time.

js....imo

 

[Steft50]

Thank you Beginner's luck.

When I heard that quote "dead,dead, dead" I wondered if it was because the mom was insisting that Jahi was alive and they kept repeating it hoping she would understand what it meant to be brain dead. It may have come across as insensitive to her because she did not see her child as being dead.at.all.

I expect many here will disagree with me, but I feel if this was really said, it was said out of pure frustration after days and days of trying to make the family understand she can't be fixed and she won't just come back. Was it wrong to do or say, certainly it was. Should this person have not lost his patience, certainly. That said everyone looses patience at times.

 

[mrsksomeday]

Where are they going to fly her? The New York facility doesn't even have an inpatient facility completed. It's still under construction.

I was thinking the same thing. As of December 22, 2013 they just had the windows installed. They posted on their facebook page " ALL THE WINDOWS WERE INSTALLED!!!! THANK YOU Riverhead Boys' Basketball Booster Club!!!"

Sounds like volunteers helped them to put in the windows. They keep saying they would take Jahi, but the facility is not finished. Are they going to ask the community to volunteer to help hurry up and finish the place? How can you volunteer to take her when there is no facility to fly her to?

She should be allowed to rest in peace.

 

[momrids6]

As I said earlier in the first thread, my son Nikel went in for almost the same procedure as Jani.

Here's a run down. Nikel was 11, still wetting the bed because he slept so heavy. He was falling asleep in class even though he went to bed at 8.30 every night and got woke up at 6. His teachers said he was extremely smart, yet lethargic. Tested well above average, but still scored bad in day to day testing. I'll be honest, my Nikel was about 20 pounds overweight at this point.

RSBM:

I do remember your touching story- I also remember you had him lose the weight and got him in the best health possible before the surgery.

My now 16 yr old almost bled to death in my arms after T & A surgery when he was 4- He had a clot- took him to the ENT- who pulled the clot in the ER, and so it started - a flow, but not extreme.... the nurse flipped out because she could not get the IV in- as he could/can have no typical peds sedation. As soon as he started crying,it blew wide open. He lost a 1/5 of his blood volume; the Head of Anethesiology put the IV in his leg while running him into the OR. I am extremely grateful he was very healthy before this event, and for the staff that saved his life.

 

[Leilei]

http://abcnews.go.com/Health/jahi-mcmath-brain-dead-girls-mom-hospitals-feeding/story?id=21381684

The mother of Jahi McMath said today the hospital where the 13-year-old girl is being kept on life support is not feeding her and has been insensitive in referring to the brain-dead teen as "the body."

"To watch my daughter just sit there and not have food ... I'm just so happy that she is kind of a thick girl so she still looks good," Latasha Winkfield said today. "I tell her every day, 'Jahi, you losin' weight girl, but you still look good.' I just think it's inhumane to not feed my child, to not refer to her by her name, and stop us in our tracks."

Unfortunately, this is just the beginning if the rapid decline that Jahi will go thru. Jahi's mom would do well to read up on brain death, how it affects those who are kept on machines and how Jahi will undergo physical changes (weight, muscle tone, etc), That way she won't be so shocked by the way Jahi changes as slips farther away each day.

This may have been answered before, but can this poor girl actually digest food? Even through a tube, are her internal organs able to process it and the nutrients absorbed?

 

[Roxye]

I do remember your touching story- I also remember you had him lose the weight and got him in the best health possible before the surgery.

Yes, I did. He was 40+ when the surgery was suggested... 20+ is still dicey. We do the best we can as parents and hope that God has our backs!

ETA.. after reading your edit, I feel for you even more. It's tough being an advocate for your children. I am so glad your child made it through and is healthy now above anything else!

 

[jjenny]

I was thinking the same thing. As of December 22, 2013 they just had the windows installed. They posted on their facebook page " ALL THE WINDOWS WERE INSTALLED!!!! THANK YOU Riverhead Boys' Basketball Booster Club!!!"

Sounds like volunteers helped them to put in the windows. They keep saying they would take Jahi, but the facility is not finished. Are they going to ask the community to volunteer to help hurry up and finish the place? How can you volunteer to take her when there is no facility to fly her to?

She should be allowed to rest in peace.

If they are still under construction, I presume they don't have nurses or doctors yet for this facility. How are they going to accomplish moving a brain dead patient on a ventillator into what is currently a contruction zone?

 

[BeginnersLuck]

If they are still under construction, I presume they don't have nurses or doctors yet for this facility. How are they going to accomplish moving a brain dead patient on a ventillator into what is currently a contruction zone?

In reality, this was most likely all stated to get a delay from the courts and it worked.

I wonder how many delays the attorney thinks he can get. They have to answer back to the courts on Friday, so I'm not sure what will happen at that point if they don't have something set in stone by then.

 

[SwampMama]

This may have been answered before, but can this poor girl actually digest food? Even through a tube, are her internal organs able to process it and the nutrients absorbed?

Hopefully thus will answer your question. One of our amazing verified medical people ( K_Z ) answered this a few days ago. Here is what they said.


"Patients who are on tube feeding exclusively for their nutrition chronically tend to have liquid or pasty bowel movements, if they are absorbing and have peristalsis. The high sugar content of the tube feed solution as sole nutrition causes all sorts of osmotic issues in normally functioning colons. Skin breakdown in the anal/ rectal area is a constant battle, along with fungal infections of the skin and skin folds. Can be very frustrating and difficult for the staff to manage.

The less mobility the patient has, and the greater their size, the greater the risk and incidence of skin breakdown, and ulceration. "

 

[MyBelle]

I'm not a doctor, more specially ...I'm not a neurosurgeon or a neurologist and I'm not a god. ( don't tell my dog)

I'm not going to pretend to be. While many of you are willing to put 100% faith in doctors you've never met and believe every word the hired spindoctor spews...I am not.

I am in total 100% agreement with the families lawyer.

The person that loves her the most in the entire world deserves to have her voice heard and respected.




Sent from my iPhone using Tapatalk

Well said. I'm flabbergasted at those who think doctors are always right and don't have their own agendas. In this case, court documents linked on this forum show the hospital failed to follow the standard required for determination of legal brain death. That fact alone should strike fear into the heart of any parent as well as respect for what this family is trying to protect, which isn't "just" Jahi's life. They are trying to protect a parent's right to make life decisions for their child.

I applaud the mother, grandmother and the brother for their voices have most definitely been heard. The love, respect and sincerity they show to one another is an example of what family is all about. They have my respect...and prayers. Jahi should be very proud.

Have a Happy New Year.

JMO

 

[MsSeal]

In reality, this was most likely all stated to get a delay from the courts and it worked.

I wonder how many delays the attorney thinks he can get. They have to answer back to the courts on Friday, so I'm not sure what will happen at that point if they don't have something set in stone by then.

I wonder if they will force the issue of the feeding tube and tracheostomy and the judge will order the hospital to do it so the body of Jani can be "released." It would buy them even more time and they would get the procedures done. They could argue the hospital is not cooperating. I can't believe there is a surgeon at CH that would be willing to take the risk with this family though.