More Medical Stuff

So today we went to LA to for an echo and an appointment with Mia's cardiologist.  Everything looked great, her heart has been stable since surgery and so at this point they've recommended we stretch our visit to every 15 months instead of every year.  Sounds good to me!  Praise God for a great report. 

Trying to get Mia into seeing a neurosurgeon is like a camel trying to go through the eye of a needle...at least that's what it feels like at this point.  I constantly am reminding myself that I am my child's advocate and nobody else cares as much for my child (besides God) as I do and this is important and I have to fight for it.  At least that's what it feels like these days.  So, we'll start with California and move on to Ohio...

Last week Thursday Mia's pediatric surgeon's office faxed a referral for her to see a neurosurgeon at CHLA.  I was hoping to get this scheduled before we leave for Cincinnati, which is next week Wednesday.  Well, I've been following up with them every day and they keep telling me they've been short staffed and haven't been able to get through all their faxes yet.  Well, finally today someone looked through the pile and said they hadn't received the fax yet....ahhh!  So, I call UCLA, have them re-fax it and yes, it finally arrived, they hope to have an answer for me tomorrow. 

Now Ohio...I called our nurse from the Bowel Management program we are attending and asked her if they could get us an appointment with neurosurgery and she said it was out of the question because they need a referral and testing from urology before they will take a tethered cord consult.  We will be seeing urology and doing the testing but apparently the answers won't come back soon enough for them to refer us.  Well, I decided to take matters into my own hands because I am my child's advocate (again I remind myself this daily...) and I called neurosurgery today, explained the situation, how we are from out of state and there is a tiny window of opportunity for us to see them is at all possible????  Sure, if we have a referral from some doctor...any doctor?  Yes, any doctor.  Great, so I had Mia's pediatric surgeon fax them the info as a referral and I will be calling them tomorrow morning to see about getting an appointment.  I asked the guy on the phone if it was even remotely possible to get in so soon because we will only be there a limited time and he told me "anything is possible."  So pray please.  Pray that we would miraculously get an appointment to have a consult with them while we are there.