Family wants to keep life support for girl brain dead after tonsil surgery #1

[kimlynn]

This reminds me of what we see during criminal trials. Take Casey Anthony's mother, for example. She went to the media, Nancy Grace first, and got her story out there to gain public support. In other trials, we see a deep distrust of the judicial system. In this case we see both a deep distrust of either the medical community or this hospital, and we see that the story was taken to the media to gain public support. The problem is that the more we hear, the more we realize that the story that was first presented was not exactly the whole story. That's what we saw in the Anthony case as well. Time unfolded more information that, if known at the outset, would have resulted in the story being a non-story. Did the Anthonys set up a fund early on, or did they confine their fund raising to the sale of photos?

Maybe it was the story as they understood it or from their perspective? I'm not saying I agree with going public,but perhaps they feared that the hospital would act in haste and they wanted it to be known as a form of protection.
I can't judge this family because whatever the end result,it is surely life altering for all concerned.
I think with time and a moving away from this facility they will understand that there is no hope for any improvement.
IMO

 

[momrids6]

Respectfully snipped for space.
I agree with you 100%
I just would like to mention a few things.
The recovery rooms I worked in had a special room where the patients that were headed to ICU were watched for a period of time before being transferred upstairs to ICU. I don't know what the rules were but IIRC there were 3 people in charge of overseeing these patients. 2 RNs and an RT I believe.

My fam gets that room every time- just in case we need to go to ICU due to our anesthesia and metabolic issues. There is an RN and at least a Nurse Anesthetist within earshot after another family member is back there.
ETA: When it is one of the kids- there is always a PICU nurse with them until they are deemed stable

 

[MyBelle]

I have no experience with tonsillectomies but my husband and I have had several out patient procedures over the years. I am pretty sure that at all of them, we were given food to eat in the recovery room; we were usually hungry because we hadn't eaten since the night before. But I also recall the nurse telling me that they wanted to make sure that I could eat something before I was discharged. Imwasmconstantly monitor for various signs and symptoms; I remember them being very insistent that I pee, because they wanted to make sure my kidneys were not affected by the anesthesia.

I would guess that they would want something similar for a tonsillectomy, but solid food would not be an option.


I remember the nurses being very attentive and am surprised to read that the nurses at this hospital were not attentive to Jahi. I had one nurse specifically assigned to me but the recovery area was very active and there was lots of staff around, who I assume would help out with another patient in a crisis.

Colonoscopies have become even scarier for me now.

yes, by all means we can't forget about those awful scary procedures including colonoscopies, Ellemo, thanks for dropping by.

 

[otto]

Realistically, that 20k is not going to last very long for 24/7 assistance. There is no way that a working mom (even with FMLA) is going to be able to provide 24/7 care to an (at the least) comatose status daughter. It's far more than her lying there with a breathing machine.

ETA, insurance will probably not cover some things in home like they would in a facility.

That's true. The problem is that the child is deceased. No doctor is prepared to do surgery on a deceased child. Any facility that will accept the child needs to know that the child is alive, so they require that a feeding tube and tracheotomy be done in advance. Therein lies the problem.

The only end result is for the family to accept that the child is deceased. If they can take her home, it will be very expensive. Perhaps that will factor into their decision ... if they truly believe that she is alive and it's only a matter of time until she gets out of bed, wouldn't they mortgage or sell everything they own to pay whatever it takes to keep her on the ventilator?

 

[gngr~snap]

My fam gets that room every time- just in case we need to go to ICU due to our anesthesia and metabolic issues. There is an RN and at least a Nurse Anesthetist within earshot after another family member is back there.

O/T
my hubby had outpatient laminectomy in Feb. They called me and my father in law back to see him. He had a problem waking up and it had been well over 2 hours!
There must have been 30+ patients back there. NO CURTAINS! In various stages of undress lying there being tended to. I was outraged! I saw body parts that no stranger should see, it gave me the creeps!
What is healthcare coming to?

Don't get me wrong I am not blaming anyone, but the area was just so large! There was plenty of staff to tend to them. Where was the dignity though?
Moo

Sent from my SGH-T679 using Tapatalk 2

 

[wendiesan]

I think the family needs to start accepting it and realize that if they have not found a facility to accept Jahi and if their appeals are denied (which I feel they will be), the it must be God's will that he has called Jahi home. They have prayed for a miracle and asked for time for a miracle to occur and it is not happening. It is now time that they must accept it ,come to terms with it and take comfort that Jahi is now in a place beyond suffering.

I would hope that their church leaders have started to prepare them for this being all part of God's plan and God's will. I am thinking that the "fundraiser" that the church was going to have was called off because even the clergy know that there is no hope for Jahi and it is not helpful to help the family continue to live in a bubble of denial.

Re: Church fundraiser
http://abclocal.go.com/kgo/story?section=news/local/east_bay&id=9375308

...Members of the All Faiths Church had hoped to help Jahi's family with money to move her to another facility. But the event that was planned for 3 p.m. Sunday was cancelled at the last minute.
Instead, the pastor for Jahi's mother led those assembled there in prayer. He is one of the organizers of the event. He says the family is still working very hard to line up a medical facility that will accept the teen and keep her on a ventilator.
But they were informed Sunday that a Southern California site they had been hoping on has decided against receiving her.

"I was informed, you know, via the attorney to not have the fundraiser because we're still trying to solidify a facility for Jahi and we definitely don't want to raise funds, you know, for something that is not iron clad," Pastor Derrick Mann said."

It sounds as though the family has very solid community support for whatever decision they make. If they have enough space for the necessary furniture and equipment, maybe bringing Jahi home would give the family a peaceful space in which to talk to her, talk to each other about her, and just be there for each other as they wait.

 

[Charlie09]

That's true. The problem is that the child is deceased. No doctor is prepared to do surgery on a deceased child. Any facility that will accept the child needs to know that the child is alive, so they require that a feeding tube and tracheotomy be done in advance. Therein lies the problem.

The only end result is for the family to accept that the child is deceased. If they can take her home, it will be very expensive. Perhaps that will factor into their decision ... if they truly believe that she is alive and it's only a matter of time until she gets out of bed, wouldn't they mortgage or sell everything they own to pay whatever it takes to keep her on the ventilator?

Again, it's easy to say that on the outside. Do we know what they own? Do we know what they've tried to come up with? Do you know if they can get a loan to do it? Isn't that...in theory what their insurance is for? To cover catastrophic emergencies?

Have they tested to see if she can breathe on her own?

 

[SeekingJana]

I always get special PACU observation too, as I have a genetic liver enzyme deficiency, which is called a Pseudocholinesterase deficiency. Even though it's noted in my health records, I have had to have crash inductions for urgent surgeries which required giving the depolarizing muscle relaxing drugs which my body doesn't metabolize well.

It's a living he!! to try to recover from that particular category of drugs for me. Takes about 8 hours to completely regain muscle function, and I am usually on a vent. for 6 hours at least. Completely conscious, just unable to move anything.
Thanks to the trustworthy CRNAs like K_Z and his co-workers, I've survived it twice.

 

[otto]

Maybe it was the story as they understood it or from their perspective? I'm not saying I agree with going public,but perhaps they feared that the hospital would act in haste and they wanted it to be known as a form of protection.
I can't judge this family because whatever the end result,it is surely life altering for all concerned.
I think with time and a moving away from this facility they will understand that there is no hope for any improvement.
IMO

One problem I see in terms of whether the whole story was told is that it was initially reported that a perfectly healthy child had a routine tonsillectomy and died. Today, we know that there is an awful lot more to the story.

I haven't paid too much attention to the facts of the case, but I understood that the child had surgery on Dec 9 and passed away on Dec 12. I understood that the family was given time to spend with their daughter before turning off the ventilator and they apparently wrapped gifts at the hospital on Christmas evening. Eventually the hospital must have applied to the courts to turn off the ventilator, because it was litigated, and is now being litigated in the media.

If the grandmother is a registered nurse, then I would have expected the family to fully come to terms with the reality of the situation sooner than Dec 12 to Dec 29 ... seventeen days and counting.

Is no one listening to the grandmother? Did she have experience in ICU such that she knew how to suction a patient with her granddaughter's condition? I don't really understand what the grandmother was doing in ICU, and I'm a little surprised that more than one family member would be allowed in ICU. When my son was in ICU, it was a very quiet recovery area for a couple of days with at most one family member. Once a patient was active enough to visit with family, he or she was moved to a unit bed. Is the religious or legal advisor having more influence over the mother than the grandmother (the nurse)?

 

[momrids6]

O/T
my hubby had outpatient laminectomy in Feb. They called me and my father in law back to see him. He had a problem waking up and it had been well over 2 hours!
There must have been 30+ patients back there. NO CURTAINS! In various stages of undress lying there being tended to. I was outraged! I saw body parts that no stranger should see, it gave me the creeps!
What is healthcare coming to?

Don't get me wrong I am not blaming anyone, but the area was just so large! There was plenty of staff to tend to them. Where was the dignity though?
Moo

Sent from my SGH-T679 using Tapatalk 2

My mother was in both a pre-surgical and a recovery area like that for her knee repair, at a large hospital. There were curtains, not being used- I pulled hers- and had a wonderful chat with the Ombudsman/Patient Advocate after I got her settled in her room.

 

[otto]

Again, it's easy to say that on the outside. Do we know what they own? Do we know what they've tried to come up with? Do you know if they can get a loan to do it? Isn't that...in theory what their insurance is for? To cover catastrophic emergencies?

Have they tested to see if she can breathe on her own?

It doesn't really matter. I have read linked comments that the insurance company is prepared to pay, that the family has a facility lined up, that the coroner has signed off, and that transportation is available. The hospital, on the other hand, has since reported that they have requested the name of the facility and transportation details, but neither is forthcoming.

I like the suggestion that they take her home if they believe that she's going to wake up any day. Maybe the fundraising will continue to be generous for as long as it takes to have a miracle.

I don't know if turning off the ventilator is part of brain death testing, but I did read up-thread that it was part of one test that was administered ... the link is between page 24 and this one.

 

[Charlie09]

It doesn't really matter. I have read linked comments that the insurance company is prepared to pay, that the family has a facility lined up, that the coroner has signed off, and that transportation is available. The hospital, on the other hand, has since reported that they have requested the name of the facility and transportation details, but neither is forthcoming.

I like the suggestion that they take her home if they believe that she's going to wake up any day. Maybe the fundraising will continue to be generous for as long as it takes to have a miracle.

I don't know if turning off the ventilator is part of brain death testing, but I did read up-thread that it was part of one test that was administered ... the link is between page 24 and this one.

Guess it doesn't matter what either of us think...I just don't know why the rush, if she's dead, she'll stay dead. If she's not then give a little time for the parents to find a moral solution for them.

 

[MyBelle]

Guess it doesn't matter what either of us think...I just don't know why the rush, if she's dead, she'll stay dead. If she's not then give a little time for the parents to find a moral solution for them.

Bravo. No rush at all, imo

 

[SeekingJana]

I hope Jahi goes home, but not for any hateful reasons. I hope she is surrounded by her family, and they are in her presence and can relax and see her and touch her, since this is what's important to them.
I hope someone will be there to help them as her appearance changes, as it will. I hope someone will be there to help them cope when her skin changes from warm to cool. Then, again when her heart stops beating altogether, as it will at some point.
Another thing- if she only has IV fluids, they will stop those before discharging her, I'd think.
IV fluids do NOT sustain life anyway ( except hyperalimentation through a CVL which is a whole other ballgame).

Jahi is already in a state of catabolism. Her muscles and organs will break down on a cellular level more than they are now as time passes. Youth has been on her side as far as how she may look to the family but youth only goes so far. I hope they have support, I really do. No one should have to watch the body of their daughter disintegrate.

 

[otto]

Guess it doesn't matter what either of us think...I just don't know why the rush, if she's dead, she'll stay dead. If she's not then give a little time for the parents to find a moral solution for them.

The family has been aware of the grave situation since December 9. She died on December 12. It's now December 30. What is a reasonable amount of time to come to terms with an unexpected death of a child?

If she's not dead, let the parents take her home ... no rush. The family can take all the time they need to say their final words.

 

[gngr~snap]

I hope Jahi goes home, but not for any hateful reasons. I hope she is surrounded by her family, and they are in her presence and can relax and see her and touch her, since this is what's important to them.
I hope someone will be there to help them as her appearance changes, as it will. I hope someone will be there to help them cope when her skin changes from warm to cool. Then, again when her heart stops beating altogether, as it will at some point.
Another thing- if she only has IV fluids, they will stop those before discharging her, I'd think.
IV fluids do NOT sustain life anyway ( except hyperalimentation through a CVL which is a whole other ballgame).

Jahi is already in a state of catabolism. Her muscles and organs will break down on a cellular level more than they are now as time passes. Youth has been on her side as far as how she may look to the family but youth only goes so far. I hope they have support, I really do. No one should have to watch the body of their daughter disintegrate.

I agree. Like an in home hospice type of situation.
I could understand wanting to be in her home with her child.in her own room instead of a facility.

To each his own and she should be allowed to take as much time as she needs. Acceptance is a process. It takes some longer than others.

I am praying for her.
I would never want to be in her shoes and pray that I never am!
Moo
Sent from my SGH-T679 using Tapatalk 2

 

[otto]

I hope Jahi goes home, but not for any hateful reasons. I hope she is surrounded by her family, and they are in her presence and can relax and see her and touch her, since this is what's important to them.
I hope someone will be there to help them as her appearance changes, as it will. I hope someone will be there to help them cope when her skin changes from warm to cool. Then, again when her heart stops beating altogether, as it will at some point.
Another thing- if she only has IV fluids, they will stop those before discharging her, I'd think.
IV fluids do NOT sustain life anyway ( except hyperalimentation through a CVL which is a whole other ballgame).

Jahi is already in a state of catabolism. Her muscles and organs will break down on a cellular level more than they are now as time passes. Youth has been on her side as far as how she may look to the family but youth only goes so far. I hope they have support, I really do. No one should have to watch the body of their daughter disintegrate.

I saw the twitching in my father after he passed away ... as the cells more or less exploded. It looked like he moved and even if I wasn't looking at him, I would see him move out of the corner of my eye. Very eerie.

 

[otto]

I agree. Like an in home hospice type of situation.
I could understand wanting to be in her home with her child.in her own room instead of a facility.

To each his own and she should be allowed to take as much time as she needs. Acceptance is a process. It takes some longer than others.

I am praying for her.
I would never want to be in her shoes and pray that I never am!
Moo
Sent from my SGH-T679 using Tapatalk 2

The hospital is not prepared to insert a feeding tube, and neither is anyone else ... it seems. There is no good outcome in that scenario, especially for the siblings.

 

[gngr~snap]

I saw the twitching in my father after he passed away ... as the cells more or less exploded. It looked like he moved and even if I wasn't looking at him, I would see him move out of the corner of my eye. Very eerie.

I saw the same when mother died.

Then it happened to me at the funeral home 3 days later!
There had to be something subconcious going on in my mind.
I was used to see her move and breathe. I know she was not at that point, but my mind kept telling my eyes I was seeing it.
I even saw her chest rise and fall like she took a breath.
I had to walk away at that point and regroup.
It is freaky. Just human nature I guess.
Moo

Sent from my SGH-T679 using Tapatalk 2

 

[SeekingJana]

I agree. Like an in home hospice type of situation.
I could understand wanting to be in her home with her child.in her own room instead of a facility.

To each his own and she should be allowed to take as much time as she needs. Acceptance is a process. It takes some longer than others.

I am praying for her.
I would never want to be in her shoes and pray that I never am!
Moo
Sent from my SGH-T679 using Tapatalk 2

Yes, the stages of grief are well- defined, but the length of time it takes to get from denial to acceptance varies extremely. Consistent words and truthful statements are what this family needs more than anything.
ONE person they trust and who is honest and trustworthy in return to help them through the stages of grief as they are letting their daughter, granddaughter, niece, and so forth leave their presence.

The world does not need to know. The world has no right to know. They need privacy and they need a sense of normalcy back to their world with Jahi as best as possible. Then they can begin to come to grips with what we looking in from the outside see-- a tragic accident with no possibility of recovery in any form.