We've just left hospital (in France) after 3 days of tests with no diagnosis and are waiting for referral to the specialist for further tests (in the UK). While the paeds ward was lovely, other parts of the hospital were awful for a baby, e.g. at A&E they insisted on trying to insert a catheter even though she did not need one medically because it was part of their admission's protocol (they also failed after trying three times and turning DD black and blue), at the scintigraphy they proclaimed that she would fall asleep as soon as I put her on the table so did not need sedation (it in fact took five people to hold her down and I had to call an end to it all when they were trying to hold still her head and close her mouth).
Overall it was a horrible experience for her. I am hoping that the UK specialist hospital will have a more accommodating approach to children, but does anyone have any ideas what I can ask for/do to help her? She is likely to need blood tests, tissue samples, bone scan, and I don't know what else.