this is a long and whiney post, please keep nasty comments to youselfs. i have previously had to name change due to utterly awful and uncalled for comments and i am not in the right place at the minute to take them on the chin.
so my little girl (2.6) such a happy little soul but has a rare condition which means she needs a ventilator when she sleeps. i have struggled for months with her doctors as they simply seem to block or ignore any and all attempts for me to voice concerns about her development. although they are only respiratory doctors we -for some reason beyond logic- have to report all and any developmental concerns to them.
we have voice concerns at every appointment, about her breathing about her development, about every single thing that doesnt seem right. but they ignored me. my most recent concern was about her walking (i have another post on that so wont bore people with the details) i raised concern 7 months ago about it. but go told nothing was wrong and it was because she was tired. now after visiting them again our consultant saw it and told us they would need to keep an eye on it but wouldnt be doing anything about it. it was the last straw. we have battled with this hospital so long. i have today phoned and made a formal request to have her care transfered to a different specialist hospital. i am now very scared as we go through the process, of switching doctors. our current clowns admitted they had no idea what to do with my daughter. so why stay with them? i was told by PALs that most families come back and that there care will not differ at any other hospital yet the hospital will be further away and most families who do decide to move have problems travelling and suffer alot of sleep deprivation and stress.
i went on the phone with a heart full of strength and came off feeling like i had made the worst decision for my daughter. i am now feeling very tearful. i have so much support family and friend wise but medically, in terms of community support, nurses, doctors etc. i feel very very alone. my daughter was born healthy and seemed fine and now all these problems are arising. she has multiple issues atm that doctors just kept passing off as 'she'll do it soon' or 'she'll grow out of that' and refused to investigate further. deep down i know something is wrong, i know multiple things are wrong but i am having to go back to basics and see our gp because we have been failed so many times. i mean, it comes to something when i tell the doctors what they need to do and why and thye do it because quite frankly google was a better teacher to me than a really expensive medical school was to them.
i am so worried this will backfire on me and my daughter will recieve worse care then she already is but at the time of phoning the hospital up, my main concern was for my daughters health and wellbeing and giving her the best chance of thriving and developing and the hospital we 'were' with did not seem like it could do that for her.
has anyone else had to make such a difficult decision?? i mean i dont drive and the next nearest specialist hospital that would be considered an option is a 2hour car journey but we would have to most likely take the train, so say about 3 hours instead. the though of having to travel with my daughter that far is also scary.
i supose i just need to get this off my chest as i cant really do it personally. i have been unable to express emotionally to someone else in person, how this all makes me feel. when really i need someone to be there and say no you made the right decision, dd is going to benefit from this change. most of my friends dont talk to me no more as they didnt want to have to be the emotional support when things like this happen and i need a good old moan and cry.
anyone hold my hand on this journey???? i always said 2013 would be the year my girl would be stablised and 'quality of life' would not be a term that would need to be used again