Re: So Fustrated I don't know what to do...
I think your'e right,move onto a ped doc who cares.you need a surgeon who has a PA or NP who is doing what you just complained about.every single surgeon has one.this is the person who you end up talking to about all of the things you need answers to.you have a RIGHT to basic info so you can help prepare yourself and mostly your child.first,you need to find out the person(and the hosp where this surgeon is on staff at and where the surgery is being done) who you are supposedly being referred to,next call your ins co and talk to member services and start asking some questions.they should know all of the most pertinent info about who the heck they are sending you to ya know?
believe me, my son has gone thru major surgery as well as myself and in every instance,i WAS informed as much as possibly could be done before it all happened.you DO have some rights here to know simple info and few other things too.you are your childs advocate and her voice,they need us to speak up for them to make certain all the right things are being done.you just have alot going on right now worrying about your daughter and her upcomming surgery,you don't need all the extra crap they are putting you thru here.about the emails?i wouldn't even bother with them at this point,obviously nobody is reading them or bothering to respond to your concerns.hit the phone.you should be able to get something from the email address tho about where this is coming from and possibly a docs name?track it back from there.i have found i get much much further and more help by making non stop phone calls til someone finally listens to me.they don't like being bothered and eventually someone will give you the needed info.sometimes,when people are NOT doing their job for you you have to get a bit nasty to get your needs met.i had to deal with actual "teams' of docs and specialists when my son went into liver failure with a transplant.at a certain point,i did not care whos toes i stepped on or who thought i was a bit*&^.my son got all his needs met and i did my job as a mom/advocate.the squeeky wheel gets the grease,ya know what i mean?this is for your child,and you deserve better treatment.i would be making some calls here and as much as i had to in order to get what you need to know,geez,its just the basic info ya know?call your ins company about this,in some cases,like with ours,we had a patient 'case manager" for anytime they have a patient who has alot of needs and needs referrals for ongoing patient care.my son had one and so did i after my spinal cord surgery was done.they were sooo incredibly helpful i cannot even begin to tell you.your ins co may have these types of people too.it wouldn't hurt to check into it.
i hope you can finally get the info you need here.just have a big chat with your ins co,they are paying these surgeons to help their patients and if they are not doing their jobs for you,their clients,the ins co should know about it.they may be able to intervene upon your behalf.i have been very very lucky in that we do have a really great ins co for our health coverage.see what services they can provide for you at this point.it never hurts to just ask.please keep me posted.if i can help in any way,please let me know,believe me,i have been thru it all,as a patient and a mom of a seriously ill child who has required major and minor surgery and a ton of ongoing procedures and hospitalizations.i DO know how you feel.hang in there and hit that phone. FB
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.