test. doctors. blah.

so big has been having headaches for about a month now.  it all started with a weird 36 hour high fever accompanied by a headache and neck pain, as well as light sensitivity and vomiting at some point.  it came on all of a sudden, and left just as quickly.  (and yes, we went to the doctor to make certain it wasn't meningitis).

almost every morning since then has been started with a headache.  so i finally called her neurologist.  tomorrow we will see the eye doctor to make sure there's nothing going on there, and have a head ct to see what is going on in there.  (yes a ct instead of an mri.  there's a good reason.  i don't desire to write it all out right now).
i mostly think she's fine, and she might just have headaches.  one of those fun NF things that can happen.  but also, she has NF...so we can't write things off quite so quickly.  thankfully, i'm aware that her mri in march was clear of tumors so i'm not freaking out about it.

and little has been on her new seizure med for almost a week now.  one of the potential side effects is glaucoma. it's a low risk, but it's there.  and a sign of it would be red eye.  guess who's eyes started to get very red this afternoon.  i have no idea if it's from spending time outside at the splash park today, and just being tired from being in the sun, or if we were lucky enough to win the 'unlikely but worst side effect possible' lottery.

as i'm sure you might be able to guess, i'm a little all done right now.  and there's no time out in this game.  i got to keep pushing forward even on nights i want to collapse on the couch and be done....like tonight. so please pray. for the girls. for me. for jason.  and for our family to have rest.  not just sleep at night, but some real rest.

she loves the water. 

so did she! (i just did this hairstyle-first time doing yarn twist/extensions. she's in love with having 'long hair.')

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.

seizing the day. and night.

this past friday night i found myself where all the fun happens on friday nights.  the emergency room.  shilo had been having seizures and vomiting.  i called the neurology department at the children's hospital, and of course got a random triage nurse as a return call.  just want to know if i can go ahead and give her an extra dose of keppra.  that's what they've told me to do the other two times.  she says, 'take her to the e.r.'  the inconsistency in all of these calls is my favorite.
i decide not to drive the 1-1/2 to the children's hospital, and go local knowing we will likely be transferred.  what is nothing short of a miracle (i know this sounds exaggerated, but seriously, it was miraculous), we had the best emergency room experience we have ever had.  i have only taken shilo here one other time.  she had a virus and i was worried her oxygen saturations were dropping.  i sat in the waiting room for two hours.  and then once the doctor took care of everything, and it was just a virus, she looked at me and said,
'i'm pretty sure it's a virus.  i can write you a script for antibiotics.'
'no thanks.  we prefer to only use them if there is a need.'
'i've given them for less.  it doesn't bother me.'
'we're good.'

and i never wanted to go back and be offered token prescriptions for my child.  i felt as if she might be the type of doctor to offer pain meds to adults.  just because.  so i was hesitant to go back.  but if i drove to the other hospital, it was guaranteed shilo would sleep on the way there, and would wake up fine.  it would be a huge waste of my time, our gas, and they would look her over, and do nothing.
the doctor who took care of us was awesome.  apparently seizing and vomiting get you an immediate back to a room here.  the doctor did labs.  and talked to me about some options.  and looked at her history, and asked me great questions.  he decided after talking to me, looking at her history, and calling the children's hospital (they are all technically in the same network-the whole state is owned by this network for the most part) to increase her dose of keppra.  she had grown quite a bit since it was started.  i can be okay with that.
the almost week since then shilo has been sleepy. a lot.  yesterday she took three naps.  and i don't know if this is due to her increase in meds (although when she started they didn't make her sleepy) or if she's having seizures at night that we don't know about.  most of the seizure activity on the eeg was at night time.
so last night, as we are ready to head to wednesday night church service, shilo has about three seizures that i can notice.  and then she vomits.  we go.  come home.  she seems fine.  put her to bed.  she gets up, and is exhausted this morning.
i call neurology.  i get a call back.  our doctor is out for the week (which makes sense because children only get sick when their actual doctor is unavailable).  the nurse asks me a few questions.  my favorite one was, 'do you skip doses of her medicine.'  i guess you shouldn't do that.  noted.  then says she'll hand her case off to someone and call back.

*side note* if you have ever watched scrubs (we have watched all of the seasons many times) there is an episode where dr. cox says a case can be treated by 'any trained monkey' and holds a banana out.  the doctor who walks by it and says, 'ooh,' grabs it.  he is then designated to treat this case.  i picture this going down as the way they decide who will figure things out for my daughter.

anyway, call back number two says to increase her night dose more.  i then kindly/forcefully make certain the nurse calls the pharmacy, lest i get to the end of our keppra and insurance refuses a refill because we went through it too fast.
they tell me to give her around 48 hours.  if my kid is still having seizures in 48 hours, we will be scheduling an eeg.  when you start meds, you aren't supposed to go from only seeing seizures at night time on an eeg (aside from the three times we had seen something during the day prior) to seeing them more frequently during the day.
sometimes doctors are more than willing to wait it out to see how things change.  what they don't know is that a wait it out approach means that my kid, who was sitting well two days ago, could barely sit today.  she's tired, and out of sorts.  i'm unwilling to let her have, heaven knows how many, seizures at night time that we don't even know about.  seizures aren't innocuous.  and i can't imagine anyone being this nonchalant if it was their child.