Why would a "Respite" children's hospital facility deny a child?

[Sharo321]

Could you tell me why you think that a hospital that takes in children that are mentally challenged and have trachs, just sick children that can't stay home any more for many reason deny a child that had a chest IV indwelling catheter delivering a medicine around for many, many years? The half-life of the medicine was short, but given they are staffed w/RN's and have a doctor in house and their Children's Hospital so close if they thought the child ever needed to go there for a problem, then what answer could there be? I am trying to find in my mind why a child would be denied, I would think this may be discrimination, what do you think? Oh, the child has PH and was receiving FLOLAN, but I don't think that any child/person should be denied due to this, do you? Thank you for you thought's, as I just need to get this off my mind, thank you.

[Sharo321]

yes, they gave a reason, it was due to the medication that was running in her Hickman catheter. The medicine was Flolan ( around for more than 25 yrs.) They said they would not feel "comfortable" controlling it and the child, with PH. She would have to "change" her medicine to something else, even though when she was put on FLOLAN, weaning off is not an option, one can NEVER stop infusing, unless she completely recovered, which she Her has not.

So in order for her parents to use her 'respite" time, and needed more than a diver need's his Oxygen...she would have to change medicine's. We, her parent's were told yrs. ago she could not change this medicine, it was doing all it could, and kept her alive for much, much longer than the expected time frame they gave her, at age 3 yrs. she would have 4-5 yrs. to live, and with Flolan at that, well, she is now 18 yrs old, but with the use of Flolan, and great care by her family, and mostly mom. This is only a treatment, not a cure med.  REMEMBER:  2 doctor's who specialize in PH disase and treatment told her parent's they would not reccomend her changing from FLOLAN to any other medicine, just due to it's half life being longer than FLOLAN, the other being REMODULIN, and it wasn't enough infomation on that drug to be sure, and change it why, just to help ease some stress for family due to the med.'s half-life in her body? no one was willing to make that choice, no doctor that is, it is risking her life.
Well, it happened after the parent's fell ill due to no one taking on this child,to give parents a rest, after parent's making at home this sterile medicine and troubleshooting the infusion pump and staying doctor on call for her chllf 24/7 for almost a decade.
her mother fell ill due to numerous reason's due to the child's illness as caregiver, the father is a lost, alcoholic, the family was split apart, when after being rejected for a FDA approved Flolan drug, she was forced to be taken to a hospital close by after her parents collapsed. The child was told by a PH specialist she had seen many times prior to change the mediine to Remodulin so she could finally go to the RESPITE facility. A family torn apart, a child life risked, for a "med. change"...that competent doctor's and nursing staff could've managed to help the family strain.
the child did go to the facility, after having her FLOLAN changed to Remodulin.
The child is alive today, not in her mother's custody. She was taken out of this facility by her aunt and uncle who couldn't bear to watch this brave, dying child have NO family around.
I believe this is a case of Discrimination due to a medicine, part of a child's life support, and it is right here in the good ole USA.
What does one say about this? What is your opinion about my theory? I need closure to this question, the chid is not resonding well to the new med.
Please if you can, helpe understand this is Ok?

[margypops]

Did they give no reason that the child would not be accepted , could you tell us why you think it would be discrimination would the hospital be in another country ?