Hoping & searching for the answer!

I have been so frustrated and stressed trying to figure out what is wrong with Victoria. I have not been able to update because my attitude is so negative. She really can't sleep so I do not either. At any case, I thought I would let you all know the latest with V... she has been back in the hospital twice since her first discharge and we can not figure out what is wrong ... They have done blood work and lab tests and nothing came up. Docs treated her with strong antibiotics and anti fungal meds via IV for 72 hours for Thrush and still no change. Maybe someone out there has some insight as I am desperate for help. She has been drinking pedialyte most of the week because it makes the symptoms go away and she can get some sleep, but how long can she live on pedialyte. I have tried changing her formula 3 times that has not worked. Victoria's Symptoms:

• fever of 101- 103 with around the clock Tylenol for 2.5 weeks (none for past 5 days)
• irritated mouth seems like its burning her ?
• white tongue-we have already treated her for Thrush and did not work.
• not able to sleep
• high heart rate
• nasty rash on face

I will update when we have some news...... We are having an upper GI test Monday to see if her fundo slipped and could be refluxing??? But we looked at that when in Philly and it looked good.
I get so frustrated when V has a hand full of docs that know her symptoms but no answers. We do appreciate there care of course but without solutions to the problems we are left with ?? and of course V is the one to suffer. It is so hard to watch her suffer and not be able to help her. It's like a sick joke . I have had enough already...