Saturday, June 8, 2013

follow up.

i want to start by letting people know that if you wrote a comment on my post about our frustrations, and it mentioned the specific hospital you thought we were using, i didn't publish it.  i'm attempting to be careful because i have launched formal complaints, and like a lot of things, medicine is a business. and i believe that when a business has blown it, that they get a chance to at least apologize and redeem themselves.  and then if things don't go well it's okay to publicly say, this specific place really messed up with this.  so i'm giving them the chance to make things right.  this does not mean we have to use this business again (i.e. these doctors).

that being said, we are home.  mostly by my choice.  after a very long convo with another neuro doctor today, i asked that they unhook her from the e.e.g. and send us home with diastat ( a med used to stop seizures that aren't stopping on their own).  there was a hesitation with, 'that medicine isn't recommended for children under two' to which i kindly replied, 'neither is the keppra she was on or the topamax that you just prescribed her because the keppra doesn't work.'  we got the med.  there's a lot more to this conversation, but hashing it all out on here would just make me flash white with rage again.  and i'm attempting to drink tea and calm down.
i know i've mentioned this before, but it's not the hospital stays that wares me out. it's not the appointments.  it's the fight.  i'm so emotionally done tonight.  and i am perplexed by the idea that one has to fight so hard for the recognition that their child is having seizures.
i also realize that my post last night was slightly incoherent.  lack of sleep.  white hot rage.  typing on a kindle.  the combination meant incoherency.  but what it all boils down to is that shilo has been having seizure for over six months now, and they have never been under control.  not even on meds.  and while i repeated this over and over again to the neurologist, people in the e.r., and even showed videos, nobody listened.  nobody listened until she had a cluster of seizures, exactly like i've been describing, and a doctor sees it, and then suddenly there is a recommendation to keep her on e.e.g. until it happens again so they can capture what her brain is doing.
i'm not going to go into the reason for the choices we have made to come home.  but that's what we did.  and tonight, we went as a family and enjoyed the local symphony orchestra on the local college campus.  they play in the quad every year, everyone picnics.  it's free, and it's a lot of fun.  i thought sitting on a blanket eating popcorn and strawberries from our garden was a better use of my night than sitting in a hospital room with an overly exhausted mama and little.
this is how i feel about home.

strawberries.  sunbonnet. symphony.

the girls.

all of us.

silly faces.

1 comment:

  1. Oh snap. I didn't even think about it being a problem with mentioning hospital names. Sorry about that. =/ Should you want contact info of the family I mentioned (they are both professors at IWU) let me know and I will get it to you. I'm sure they would be happy to share their experiences with you that led to them moving care of their child elsewhere. Hope you guys enjoyed your evening. :)