A new posting today on the Miracle site thanks supporters for sending gifts and cards to Justina and then says more would be welcome and gives their home address. But not a word on her current condition, diagnosis or treatment. So we still do not know why the Rev. rang the prayer alarm bell the other day.
They recycled a picture they posted during her hospitalization at Yale New Haven, again asked for gifts, and gave their home address all while she is reportedly still hospitalized in Philadelphia? I realize that her sisters are driving back and forth to visit her, but why would they want the added hassle of dealing with hauling gifts (4+ hours) to PA? If they are concerned about inappropriate content, why ASK for gifts at all? Are they opening the packages before they give them to her? The fun of receiving mail for a hospitalized child is usually the mystery of opening the package, not the accumulation of "stuff." And honestly, the accumulation of "stuff" is a problem of its own. Like many children's hospitals, CHOP has some fairly strict rules about the amount of stuff you can bring into the room. A comfort item like a blanket is welcome (as long as YOU are washing it regularly) - multiple blankets and pillows and personal sheets on the bed are generally not. A couple of (regularly washed) stuffed animals, cards and notes pinned to the walls or bulletin board, and a few Mylar balloons and/or flower arrangements are welcome and encouraged - an explosion of "support" gifts are generally not. Depending on the type and size room she is in, she just does not have much room for tons of stuff. CHOP actually has written policies asking long term hospitalized patients not to bring more then 1 week's worth of supplies (clothing etc) into the room at a time and all patients to keep personal items off of counters, bedside tables, windowsills and the floor.
http://www.chop.edu/patients-and-vi...-visit/guidelines-clean-safe-room#.VJRn2coAIA I am guessing that they are well aware that the hospital does not want to be flooded with gifts and cards and stuff (and the associated debris) for a single patient, which is why they are asking people to send it to their home. But in that case, why ask for it at all? Why not ask for web greetings, youtube videos, etc like they have in the past? Someone posted to the "Miracle" site asking that they provide names of OTHER children at CHOP who would like to receive mail. So far, they have not responded. It will be interesting to see if they do.
Hospitals work very hard to get all but the most critically ill children home for the holidays. She can go home in a wheelchair if she is unable to walk, she can go home with a feeding tube if she is unable to eat, she can go home with an IV if she is unable to drink, she can even go home with appropriate care if she is unable to use the bathroom. Family members can be trained to give IV medications or home health services can be ordered. If she is not released in time for Christmas, it means the doctors are treating her for something other then mitochondrial disease. This could include things like cancer treatment that can't be temporarily stopped, organ support while waiting for a transplant, more extensive life support, psychiatric care, or concerns about abuse or neglect in the home. I would rule out the first three immediately life threatening issues because if she had cancer or organ failure, the Pelletier family would tell the world - while, of course, blaming Boston Children's Hospital. Unless I am missing something, that would leave severe psychiatric issues (mild to moderate issues would allow her to go home with support) and child abuse. Wasn't that Boston Children's Hospital's and MA DCF's contention all along???
The above is, of course, my opinion only.
