Pa. girl's parents challenge lung donor rule

[Linda7NJ]

"back to a traditional ventilator"? Meaning she was on an oscillator? OR meaning she is transitioning to a 'home vent'?

For the uninitiated, there are thousands of children in the US on ventilators at home. These children, for whatever reason, require permanent ventilator support to survive. ALL such children require a permanent tracheostomy tube which is changed out weekly. They are cared for by their parents with some nursing support.

The cases I've worked in the past get 8-10 hours/ day, 5-7 days per week of nursing support care. All the other hours of the week, they are cared for by the parents.

Just some background information.....

Thank you! I learn so much interesting stuff from the intelligent posters here!!!

 

[jjenny]

Does that mean she will have to be permanently attached to a ventilator?

 

[Elphaba]

"back to a traditional ventilator"? Meaning she was on an oscillator? OR meaning she is transitioning to a 'home vent'?

For the uninitiated, there are thousands of children in the US on ventilators at home. These children, for whatever reason, require permanent ventilator support to survive. ALL such children require a permanent tracheostomy tube which is changed out weekly. They are cared for by their parents with some nursing support.

The cases I've worked in the past get 8-10 hours/ day, 5-7 days per week of nursing support care. All the other hours of the week, they are cared for by the parents.

Just some background information.....

Thanks for the explanation: I follow a child on Facebook, from my hometown, that beat brain cancer. Unfortunately, the aftermath has left him with the need of a trach and on oxygen 24/7. Last evening his grandmother reported that he had had a little setback and was back on the home vent for a spell. I was kind of surprised because I always thought that a venting meant a hospital visit... but I didn't think it would appropriate of me to ask her to explain home venting. So yeah, thanks for explaining!

 

[meanmaryjean]

Does that mean she will have to be permanently attached to a ventilator?

I'm thinking the answer is 'yes'. Sadly.

But these home vents are portable. I've taken vent kids to the zoo, baseball games and lots of other places. (When other children stare, I lean over and whisper in their ear "She's bionic!")

You also have to drag along an oxygen tank, suction machine, marine-type battery, pulse oximeter and emergency supplies. Try fitting all THAT into the back of a Prius with a car seat AND the overweight nurse. Good times!

 

[meanmaryjean]

As long as we're on the subject, the most common reason for a home ventilator (in children) are:
1) muscular dystrophy
2) spinal cord injury
3) former preemie with lung damage
4) congenital heart defects which cannot be repaired / have not been repaired yet
5) central hypoventilation syndrome (Ondine's curse)

 

[Reader]

Sarah Murnaghan Stands During Physical Therapy

http://www.myfoxphilly.com/story/22898309/sarah-murnaghan-stands-during-physical-therapy

7/22/13

Late Sunday night, Sarah's mom posted a picture on Facebook, saying "Sarah stood today in physical therapy, after months in bed and lots of time paralyzed and sedated. This was a huge accomplishment. Here she is sitting up in bed all by herself."

It's a big step for little Sarah as she battles to get home for her birthday.

There is a picture of Sarah sitting up in bed; I couldn't save it or get it to embed. Maybe one of the health professionals can tell what machines she is still connected to. TIA

 

[BuzzieCat]

http://www.cbsnews.com/8301-204_162...ult-lung-transplants-to-leave-intensive-care/

"Another 'graduation' for Sarah tomorrow, she will move from the PICU to the Progressive Care Unit (PCU). This should be our last stop before home," Sarah's mother Janet Ruddock Murnaghan wrote on her Facebook page on Wednesday according to CBS Philadelphia.

 

[meanmaryjean]

If anyone is still interested - the background equipment in the cbsnews picture in the story above is: the tan boxy-looking device on the right of the picture is an LTV portable ventilator. She is attached to this via her tracheostomy. The hanging bag of formula behind her off to the left is a continuous tube feeding set-up. So, she has also had a feeding port implanted in her abdomen (probably on the day she had the tracheostomy done- we commonly do both procedures in the same anesthesia session).
This indicates to me that she is either a) not able to eat at all by mouth or b) is unable to consume sufficient calories to maintain her needs.
She looks good in the picture.

 

[Blondie in Spokane]

"11-year-old lung transplant recipient to undergo another surgery"

Read more: http://www.foxnews.com/health/2013/...nother-surgery/?test=latestnews#ixzz2bo8on0Bl

"On Wednesday, Murnaghan, who suffers from cystic fibrosis (CF), will undergo surgery to correct a minor acid reflux problem, according to her mother’s Facebook page."

 

[meanmaryjean]

"11-year-old lung transplant recipient to undergo another surgery"

Read more: http://www.foxnews.com/health/2013/...nother-surgery/?test=latestnews#ixzz2bo8on0Bl

"On Wednesday, Murnaghan, who suffers from cystic fibrosis (CF), will undergo surgery to correct a minor acid reflux problem, according to her mother’s Facebook page."

Again, information filtered through mom. a Nissen fundoplication is NOT done for 'minor acid reflux' problems. Far from it. It is done when all medical therapy has failed, when the reflux is significant and damaging. It leaves the person unable to vomit, but I suspect the girl is being tube-fed so that's not so much of an issue.

 

[BuzzieCat]

http://www.nbcnews.com/health/11-year-old-lung-transplant-patient-her-way-home-8C11003394

An 11-year-old Pennsylvania girl who received two double-lung transplants after her parents challenged the nation's organ allocation system is expected to go home on Tuesday, more than two months after the life-saving surgeries.

Article includes a picture of the girl and her mother with some of her medical equipment.

 

[jjenny]

http://www.nbcnews.com/health/11-year-old-lung-transplant-patient-her-way-home-8C11003394


Article includes a picture of the girl and her mother with some of her medical equipment.

Her face looks very bloated. I presume because of anti-rejection meds.

 

[meanmaryjean]

The 'moon-face' is typical of someone on long-term steroids. Interestingly, there appears to be a wound-vac (on the bottom of the equipment by her side, with the letters 'vac' on it). This device is for non-healing wounds and is pretty heavy-duty therapy. {My oldest daughter happens to be an RN also, specializing in the treatment of wounds!}
And while it says she is off oxygen several hours a day, she is still on the ventilator.
I'm curious about this picture, as she seems slumped over on the wheelchair.

 

[Blondie in Spokane]

"After lung transplant that changed the rules, Sarah is doing fine"

http://t.nbcnews.com/health/after-lung-transplant-changed-rules-sarah-doing-fine-2D11785542

 

[Elley Mae]

Murnaghan Family Takes on Facebook Critics After Lung Transplant

http://abcnews.go.com/Health/murnag...ook-critics-lung-transplant/story?id=22788182

 

[meanmaryjean]

Interesting. Esp. the seizure part. And yet another picture with the mom in it.

 

[al66pine]

Snipped from same link as above:
http://abcnews.go.com/Health/murnag...ook-critics-lung-transplant/story?id=22788182
"I want to be having an open discussion about this,” Janet Murnaghan told ABCNews.com.
“What isn’t OK is when my 11-year-old child is thrown into it. ..."

Respectfully, she can do 'open discussion' interviews w all the MSM she wants about rules.
She can operate, edit, control, and censor all her SocMed sites she wants and post her side of the open discussion there.

But she campaigns/ed to force a business to delete a FB page a/c
because some people there disagree w her position?
From link: "The Facebook group Janet Murnaghan wanted taken down, “Discussing Lung Transplantation and Sarah Murnaghan,”
debates whether Sarah should have gotten the adult lung transplant
and has questioned whether suing was fair to the other patients on the organ transplant waiting list.
They also discuss other transplant cases as well as technological and ethical issues surrounding transplants and recovery."

My take: She wants an open discussion about rules in MSM & SocMed,
as long as people w opinions differing from hers have their mouths taped shut
and their keyboards & Internet connections unplugged.

Appears Aug 2013 vid at abc link recorded recorded Mama and Sarah as a
promo for an upcoming cnn news story about her?
Now Mar 2014 Mama says she it's not okay when 'my 11-year-old child is thrown into it.'

Hoping the fullest recovery and best health possible for Sarah and other patients like her.

Disclaimer: I've not visited either Mama's website or FB page she wanted deleted.

 

[K_Z]

If anyone is interested in watching an interesting, but difficult, documentary on lung transplantation and cystic fibrosis, 65_RedRoses is on Netflix. I have followed the CF and lung transplantation discussion for years, as I worked with CF patients early in my nursing career about 30 years ago. CF patients were not eligible for transplants back then. Anyway, it's an interesting movie, as they follow young adults with CF.

65 Redroses - Wikipedia, the free encyclopedia