[tri-med] Hope gained her wings

Last Wednesday, January 14th Hope passed away at 8:00 in the morning.  She 
was in the hospital for pain management.  Her little body just couldn't handle 
it anymore,  The seizures were getting worse even when we went up in the meds, 
she was refluxing even on continuous feeds - it just wasn't fair to her to 
keep her with us.  We worked with a palliative care/hopsice dr at the hospital 
who was wonderful and we started her on morphine regularly.  for the first time 
in a long time I finally saw my little girl at peace.  I spent the night in 
the hospital with her and held in in my bed.  My husband came over and held her 
and we knew she was struggling and that it was close.  We just didn't expect 
it to be so soon.  A few hours later she passed away.  I am struggling but I 
know that she is comfortable,  The last two months were horrible for her and 
she 
just seemed to be in constant pain.  I am so grateful for this website and 
all the support, advice and information that was provided to me.  I am going to 
continue to fight for pediatric hospice care in DC since it doesn't exsist and 
fight our insurnace - ironically the day Hope died we recieved a response 
from them denying hospice care - saying she wasn't terminally ill!
Thank you all
Meghan (Mom to Hope, Full T13 6/18/03-1/14/04)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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