DC - Justina gets standing ovation from Congress

[i.b.nora]

A couple of new posts today:

First, today is a prayer vigil.

Second, is a 'thank you' to everyone supporting Justina as she really needs it at this time. Says all the staff at Yale has been really good to her. She is still waiting for the next step.
And a special thanks to all who have sent cards, etc. (with a snail mail address).

 

[annahanna]

A couple of new posts today:

First, today is a prayer vigil.

Second, is a 'thank you' to everyone supporting Justina as she really needs it at this time. Says all the staff at Yale has been really good to her. She is still waiting for the next step.
And a special thanks to all who have sent cards, etc. (with a snail mail address).

In a follow up post, Jen mentions that she "is going to be in for a while...."
I find this very odd. There is a very short list of the reasons why a hospital would keep a pediatric patient for an extended period of time. These include psychiatric treatment, severe infection/sepsis, severe trauma / burn / wound care, organ transplant, waiting for organ transplant and medically unstable to be outside of hospital, severe immunosuppression, medically unstable pre/post surgery, life support/ICU. Aside from that, even cancer patients undergoing treatment, kids waiting on organ transplants, etc are usually discharged to go home, to a local hospital, or to someplace like the Ronald McDonald House. Most pediatric sub-specialists consider hospitals to be germ factories and try to get kids out ASAP. Outpatient therapy and diagnostics are preferred whenever possible. Weeks of hospitalization, with more to come, and no known diagnosis raises my hinkey meter - even higher then it already was.

The other thing that is troubling me is Justina's address for cards and gifts. It MAY be a typo in the post, or the hospital may have reorganized and moved units around, but unit 7-3 used to be babies and toddlers - not teenagers. It's been 8 years or so since we have been there, so things may have changed. This is Yale New Haven Children's Welcome Booklet. http://www.ynhh.org/vsitemanager/upload/docs/ynhch_welcome_072110.pdf
It lists (page 15) the infant/toddler unit as SP 7-3 and the school age/adolescent unit as SP 7-2. This appears to have been published 7/10/2010, so again, it may have changed.

ETA:
The cutoff for inpatient psychiatric treatment at YNH Children's is 14 - so that is not the reason she is there either.

 

[Morag]

(snipped)
ETA:
The cutoff for inpatient psychiatric treatment at YNH Children's is 14 - so that is not the reason she is there either.

Is it possible that because of her disabilities and her innocent naivete that she would be more appropriately housed in this place rather than with older teens?

 

[annahanna]

Is it possible that because of her disabilities and her innocent naivete that she would be more appropriately housed in this place rather than with older teens?

Possibly, if they had room. It is apparently small - 15 beds - and for ages 4 to 14. Since they have an onsite school, and Justina was reported to be functioning many years below grade level academically, they might place her there for the educational aspect.

http://www.ynhh.org/yale-new-haven-childrens-hospital/medical-services/psychiatry.aspx
Inpatient Hospital

The Children's Psychiatric Inpatient Service 15-bed inpatient hospital is for children with neuropsychiatric, developmental and behavioral problems. It provides comprehensive psychiatric, psychosocial and educational evaluation and short-term treatment for children ages 4 to 14. CPIS's highly trained staff encourage parents to join the multidisciplinary treatment team to help better understand their child, initiate active treatment and develop an effective, comprehensive discharge plan. CPIS is the only facility in Connecticut with a state-accredited special education school, which runs Monday through Friday, for all inpatient school-age children.

**It could also be a way to control parental outbursts and demands. If they told the parents from the start that she was too old for the program, but they would place her there (instead of the adult program) as long as they did not draw attention to her and did not draw complaints from other parents.... I am of course, just speculating. However, I know people who were hospitalized on the Neuro floor with Justina and my child was at BCH a couple of times while she was inpatient. They were very difficult to miss.

 

[sweetmom]

I am impressed with the volume of info that Annahanna has kindly supplied. Very, very useful for understanding the ins and outs of this complex case.
IMO, it could well be that Y-NH sat the family down and told them they would not accept/keep Justina as a patient if the same shenanigans they pulled at BCH began happening there. And also, IMO, I have always thought one important reason that BCH moved Justina from the neuro floor to the locked psychiatric ward was to limit the hysteria-laden family visits to once a week. IMO, they were not so much locking her in as they were locking them out. So sad, really.

 

[i.b.nora]

In just the last hour or so, Jennifer has posted a brand new picture of herself and Justina inside the hospital. Justina is in a Halloween costume and has a coverlet over her legs. Maybe its cold there? Or maybe its part of the costume?

 

[annahanna]

.....
3) Dr Korson is no longer seeing patients at Tufts and Tufts Floating Hospital for Children has closed their Mitochondrial Disease Program. It was very quietly announced in late September that effective October 1st, these changes would take place. This angered many members of the "Mito" community not only because of what was happening, but the way in which it was happening. Apparently, Tufts did not immediately send out a press release or contact patients/parents. Instead, they just began canceling appointments and declining to make new appointments. An announcement was posted on the MitoAction Facebook page, but may have since been removed. I will post a copy of the announcement as well as a link to a site that copied it from MitoAction. (Mods, please edit as you see fit. This site -Mito Families News! - does not solicit donations, and is a legitimate news outlet for families impacted by mitochondrial diseases.). The Tufts Floating Hospital, MitoAction, and Mito Families News facebook pages all contain references to this change at Tufts. Many of the more inflammatory or angry comments are removed by moderators, but the calmer ones can be found. There have also been some questions on the "Miracle" account about this, but I believe that they have all been removed. I don't understand the secrecy about this unless there is some sort of legal or medical malfeasance involved, but I don't doubt the accuracy of the closing. I know parents impacted by this who are now looking for new doctors for their kids.

"If you have not heard they... I'm sorry to be the bearer of bad news. The Tufts Mitochondrial clinic is shutting down as of tomorrow. Dr Korson is moving on to an educational position.
Here is the most recent update by Mitoaction in regards to all this (they are getting the best info is why I copied the whole update)
"We have an official statement to share from the Tufts Metabolism Program:

"Tufts Medical Center is refocusing its efforts to clinical genetic disorders. Dr. Korson’s position is being eliminated and there will be no metabolic physician at Tufts after November 1. Mitochondrial patients are urged to contact MitoAction or the UMDF for information regarding other physicians who treat mitochondrial patients."

If we can help you, Dr. Korson has been working closely with MitoAction to ensure that his patients will have as smooth of a transition as possible. We have a plan in place and are responding to each request as quickly as possible to offer guidance. Please send a brief email to [email protected]"....

Quoting myself to bring this foreword.
At the time that I posted this, the Tufts Floating Hospital for Children was still listing Dr Korson as being on staff and the Mitochondrial Disease Program as an active department at the hospital. As of this morning, if you go to the hospital website https://www.floatinghospital.org/ and click on "find a doctor", Dr Korson is no longer listed. It is still possible to navigate to the Mito Program/Mitochondrial Disorders page.
https://www.floatinghospital.org/Ph...cation=&language=&letter=K&pagenum=1#listings

 

[annahanna]

I mentioned the other day that the inpatient psych ward at Y-NH was small at only 15 beds. Apparently that is not all that small. I was informed over the weekend that the Bader 5 unit at BCH only has 18 beds. Sorry if I gave the wrong impression.

 

[sweetmom]

Quoting myself to bring this foreword.
At the time that I posted this, the Tufts Floating Hospital for Children was still listing Dr Korson as being on staff and the Mitochondrial Disease Program as an active department at the hospital. As of this morning, if you go to the hospital website https://www.floatinghospital.org/ and click on "find a doctor", Dr Korson is no longer listed. It is still possible to navigate to the Mito Program/Mitochondrial Disorders page.
https://www.floatinghospital.org/Ph...cation=&language=&letter=K&pagenum=1#listings

I am really surprised that the Globe reporters who did most of the stories on the whole BCH mess have not picked up on this. It seems like a logical follow-up, what with Justina back in the hospital for over a month and Korson having been the doctor who they felt most supported their version of the facts. Korson, IMO, because of his position at Tufts, gave them at least a bit of credibility, but if he has been forced out (if that is indeed what has happened), then it casts the whole story in a new and even more unfavorable light for the family.

IMO, if one of the doctors at BCH who treated Justina there had suddenly left the way Korson has left Tufts, the media and the conservative websites would have been all over the story as they were leading up to her release.

Maybe after the elections are over, and the Menino story fades, someone at the Globe will jump on this. Or, maybe not. Has anyone from the parents' mito groups considered contacting the paper, I wonder?

 

[annahanna]

In my opinion, Tufts has been as quiet about Dr Korson leaving as possible specifically to avoid the type of negative publicity that the Pelletier supporters piled on to BCH. Tufts is a much smaller and, despite Pelletier protestations to the contrary, less prestigious facility that is less able to handle that level of hate speech and venom.

Personally, I do have to wonder if Dr Korson undiagnosed Justina or at least went along with the BCH opinion based on the test results and observations during her very long hospitalization. Sometime in the three months between her homecoming and her first reported hospitalization, she stopped seeing Dr Korson. Considering the almost hero worship with which they spoke of him previously, something must have happened to make them decide to hospitalize her at Yale New Haven instead of Tufts. It would be interesting to know what that was.

 

[sweetmom]

In my opinion, Tufts has been as quiet about Dr Korson leaving as possible specifically to avoid the type of negative publicity that the Pelletier supporters piled on to BCH. Tufts is a much smaller and, despite Pelletier protestations to the contrary, less prestigious facility that is less able to handle that level of hate speech and venom.

Personally, I do have to wonder if Dr Korson undiagnosed Justina or at least went along with the BCH opinion based on the test results and observations during her very long hospitalization. Sometime in the three months between her homecoming and her first reported hospitalization, she stopped seeing Dr Korson. Considering the almost hero worship with which they spoke of him previously, something must have happened to make them decide to hospitalize her at Yale New Haven instead of Tufts. It would be interesting to know what that was.

I guess it is possible that they did not want to return to a Massachusetts hospital, either because of the distance or because they feared running afoul of Mass. DCF once again. But it certainly does seem odd that Justina is no longer a patient of Dr. Korson.
There is a real mystery here to be uncovered, IMO, and I am wondering if someone at (or formerly at) Tufts -- not Dr. K -- who may now be out of a job since the Tufts Mito Clinic is no more. . . is disgruntled enough to do some whistleblowing. It also seems odd that the Miracle for Justina site has not mentioned the changes at Tufts in any way and/or how they will affect her.

 

[annahanna]

Apparently, Justina has had some sort of surgery. On the "Prayer VigilFor Justina Pelletier" Facebook site, it was mentioned on 11/3 that she was having more tests and on 11/5 that she had had surgery. There have been several posts since then asking for prayers for Justina to heal from the surgery. There was also (at least one) post this morning on the "Miracle for Justina" site asking about her surgery. So far there has been no apparent response from the family.

 

[sweetmom]

Apparently, Justina has had some sort of surgery. On the "Prayer VigilFor Justina Pelletier" Facebook site, it was mentioned on 11/3 that she was having more tests and on 11/5 that she had had surgery. There have been several posts since then asking for prayers for Justina to heal from the surgery. There was also (at least one) post this morning on the "Miracle for Justina" site asking about her surgery. So far there has been no apparent
response from the family.

I can't find any mention of the surgery on the Miracle site, except for the poster who asked about it. But I am sure you are right. I'm guessing it was some sort of GI surgery. Hope it helps her, she sure could use some good news.

 

[i.b.nora]

New post tonight on the Miracle page. Nothing about a surgery, says awaiting more tests. Some new photos and thanks to those who have sent Justina cards and gifts.

 

[txsvicki]

There is a pic of Justina in bed with gifts, i believe that people have sent. There looks to be a big bump on her forehead and bumps on the bald spot.

 

[annahanna]

...Interesting. The posts referencing surgery have been removed from the "Prayer Vigil" Facebook as well as Reverend Mahoney's Facebook. Numerous posts from 11/3 and 11/5 are gone.

 

[annahanna]

There is a pic of Justina in bed with gifts, i believe that people have sent. There looks to be a big bump on her forehead and bumps on the bald spot.

You are right. There are definitely a number of odd looking bumps. I wonder what caused them?

 

[Hiandmighty]

I officially have a problem with people sending her gifts. It doesn't sit right with me.

 

[jjenny]

I officially have a problem with people sending her gifts. It doesn't sit right with me.

Then you don't have to send her anything.

 

[Hiandmighty]

And I didn't.