Friday, January 17, 2014

What a difference a day can make

Many times I spill my frustrations right here in this blog.  I share the daily struggles and stresses AND joys that I experience in being Lillian's Mom.  Of course, there is nothing like LIFE to give you renewed perspective each day.  And while the things I share are frustrating and build up and wear on me, please oh please never mistake those feelings for the grattitude and joy I have in this job as well
. A young mother, a high school senior in my daughter's class buried her 18 month old son this past week.  He had special needs and Bethany had recently shared a video of him laughing and moving his legs. Something his parents were told he wouldn't be able to do.  Tears streamed down my face yesterday as I listened to the music playing she posted on facebook of his memorial video.  I don't know why he died, if he got sick or what...but it is a stark reminder that tomorrow is never promised to us.

It takes me back to those NICU days...I counted at least five babies in the six weeks she was there that didn't make it out of the very unit we all shared.

So today, I find myself grateful to have:
a pharmacy to fight with about medications and preauth letters...
an insurance company to cover the costs of a urologist
and a doctor to follow up on tests even if I have to call 100 times.
Formula and feeding bags to prepare each day
 and most definitely a skinny little bottom that doesn't fit in her britches

She lives.  Period.

Wednesday, January 15, 2014

Seems like at times

one thing piles on another after another after another..then some little something that is absolutely miniscule sends me into a weeping heap. It's been one of those kind of weeks or two..hee. Yep, the other morning, I was trying to get her dressed and I kept pulling out one pair of pants after another that just weren't fitting.  Threw me right over the edge.  Kinda funny when I think about it now.  But seriously...we had an issue with the pharmacy...big shocker.  So let me see if I can give a short version.  She's on a very expensive IV antibiotic that is given by nebs.  She's been on it for a year.  Requires preauth from insurance.  I call in the refill.  I call in 3 different meds actually.  Three days later hubs goes to pick up drugs (I've received a preauth letter in the mail the day after calling it in) comes home with no antibiotic but with a note on the bag stating they need preauth.  HELLO?  They are the ones who initiate the preauth but they don't check to see if it comes when you come to pick up the meds when there is a note on the bag???  One of the other drugs was out of refills, which I did not know.  So they faxed a request to her physician who does not accept faxes on refills.  I have to call them.  But since no one let me refill.  They graciously offer to sell it to me OTC even though her insurance covers it in full!!  After a fight basically I get the meds.  BUT COME ON...REALLY?  Just another she had the VCUG and kidney and bladder ultrasound weeks ago.  I call the dr a week ago and ask about results.  I knew there was reflux but I didn't know the extent and I had no results on the ultrasound.  I was on the cusp of calling again when they finally call me to tell me "there is grade 2 reflux in the kidneys" and I know, to see what the plan is since that is worse than the last time we checked her kidneys.  She says nothing.  I tell her, this is worse, what does the dr want to do....her response "hmm, I don't know he didn't tell me that" She calls me back and tells me he wants to refer her to a UROLOGIST.  Ok.  What urologist do I want to use?  I don't know, I don't have a rolodex of pediatric urologists in my brain.  I don't even know who is on the insurance.  Isn't there a referral nurse who handles these things?So then I call insurance and she's happy to send me a list of specialists for the kidneys.  I get the email.  A whole list of pediatric NEUROLOGISTS. I keep thinking I must have ridiculously high expectations.  You think?
  I'm sure lack of sleep and housatosis all play into this.  Oh yeah, and after the sewer back up disaster that puts us back into house hunter mode again.Which is a whole other frustrating situation all on it's own.   This past weekend my mother in law has a fall that causes a very bad head bleed.  She remains in critical care, but I believe she is out of the woods on the bleed..just a ton of recovery ahead of her.
 So, why, you ask does a silly pair of pants cause such a reaction...well it brings to light her slightness, how very tiny she is.  Not to mention she spent the entire day yesterday stumbling around quite a bit more than usual.  By evening she takes a couple bad falls.  Which has me wondering if her ears are out of whack or maybe its her sinuses?  Never ending.

Housatosis (house-a-toe-sis): the inability to leave ones home for an extended period of time causing stir crazy behavior.