Lost and I need help

[Guest guest]

I have posted here before, about my 9 year old Kierra. I just have

some questions that maybe you can help me with. Kierra is currently

on Tpn, she has a mediport. She had 5 feeding tubes but her gi

track could not handle the feeds. She had a muscle biopsy in July.

I got part of the report back. She had some high levels and some

within normal. They said that they had to wait for her skin

biopsies to come back to see if it was mito. I haven't gotten the

final report, but they do not believe that it is mito. I think they

are wrong. Kierra is 9, on TPN 12 hours at night she has gained

weight. She is about 56 pounds right now. She can hardly eat

without getting sick, her normal body temp is between 95-96, her

blood pressure is low, she is pale, she has factor V, Lupus

antiquagulant(sp?) her pt and ptt levels are always elevated, they

are now adding vit k to her tpn, she gets weak with walking to much,

chronicly consitpated, complains of headaches, she is currently

homebound from just being sick all the time. HEr GI issues are gp

and dysmotility disorder. WE are in Pittsburgh and we are suppose

to have the best doctors. Ha Can anyone relate? Is there anyone I

could see that could help us? I was going to take Kierra to

Cleveland on the 14th of Dec. but insurance will not pay for it and

we aren't sure if we can swing the cost right now. Thanks for your

help