Sunday, May 20, 2012

And I'd Like To Start This One Off With It Sucks now Back OFF!!

Need a laugh before I beat myself. So I am damned if I do... we'll try the don't approach for awhile and see how that works.
This is long winded, so to answer the running question that it will bring up in your head. She is fine now, very very relaxed, and sleeping. Might sleep for days... :)  :(
I've been very dedicated in researching and pushing the Neuro these past four days. Off hospital duty today for an 11 hour set up to break down yard sale.  Even when I arrived back at the hospital tonight I am grilling Joe with, "What did she eat?" (Only for me it's not what, it's how many oz. -which is more nitty gritty than i'd like to be) Then it's "Did they do a level today?" "48 that's higher than yesterday!" (wanting to see a bigger drop - around 10 points so my noodle baby can be more in control of her body.) So the fellas leave.
She and I are alone did a nice big bottle tonight, just finishing a long process of getting meds squeezed out of bottle nipple into mouth w/out any dripping out of mouth as she can obviously taste this mix and is not happy. So we move in chair AND she locks up-tightens, really tightens, tone all of a sudden???  So I ask her "are we having a seizure - the go to question for all oddness now - or is this an, "I gotta tighten up to poop?" It felt more throughout, not just in the abs.
Then she starts to cry and I lie her down which brings on more crying, AND TWITCHING. Too much twitching. I alert nurse 1 (unknown).  After more symptomatic twitches of different body parts I alert another person, we need the doctor here NOW she is very twitchy.  (To fast forward this event- we wait for, oh say, an hour after first gut feelings of this is a seizure starting, she told me herself. for emergency med to arrive to be given.) "WHY THE BEEP IS IT NOT IN HER OUTPATIENT OR INPATIENT FILE! SERIOUSLY!!! IF IT WAS, WE COULD HAVE HAD IT IN HER IN LESS THAN 15MIN.  Note to self: I will always have rescue med on my person, EVEN IN THE DANG HOSPITAL because the Neuro. epilepsy/seizure specialist said, "If you have a gut feeling give it to her." And then I can say, (to the doctors taking to long to get here to evaluate her, then to go call Neuro, then the Neuro eval. then oh we don't have it on order, oops! Let's call the pharmacist to order it, (I CHIRP IN HERS IS DIALED TO 7.5MG.) Oh the pharmasist says he's only doing 5mg. wait, wait, wait.) "Really, screw you guys for screwing up and shove it up her butt myself! I mean normally I am calmer and try to follow the rules, but when it comes to potential brain damage, um not so much. I said later on to resident Neuro, "So do they have it right there in the ER? Because maybe next time I'll scoop her up and WALK DOWN THERE!!"  The answer was yes.  Excuse the outburst, not a live one, but COME ON PEOPLE, GET WITH THE PROGRAM!  I'D THINK THAT YOU'D HIGHLIGHT, "HAS BIG LONG VERY BRAIN DAMAGING POTENTIAL SEIZURES, KEEP RESCUE DRUGS NEARBY.  Well if I were her Neuro I would have.
UGHHHHHHH!   I hate this because almost every other day I have this internal (well probably very external as I keep very little in) love or hate relationship with her Neuro here.  I don't like not liking her, she seems great.
So maybe I need to chill for awhile, pray, and see if God tells me, "Yes. It does suck. Now back off and let the trained folks do there job. Quit butting in. Learn to give it up and trust me, or I'll teach you this lesson again." This is the current prayer request as it seems like the more I fight it, the bigger the lesson gets.  Maybe I am meant to be a phlegmatic (go with the flow) and need to give up all choleric (controlling) tendencies.  Sounds fun. I'd love to be that person everyone thinks is so sweet, and not bossy. I guess pray that she has peace in knowing that we are all here for her.  All of us! Thank God.

1 comment:

  1. Oh Lin, I'm so sorry you have to go through this. I'm just glad that you're on top of things and will be the best advocate for your daughter. That's one think I've learned from having family members in the hospital, you need to have someone who has an idea of what's happening and constantly pushing and asking questions of the hospital staff. I guess you can say that the staff are human but that doesn't change the fact that it's YOUR daughter or YOUR family member they're working on and possibly making a mistake. Hang in there and know that you have an army of people praying for you.