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.

A Line From A Buddy...

It Sucks. Now Back off!  A lovely line for a shirt to wear while here!  Well I don't feel that I should have to do all of the research and investigating that I am having to do, as I am not the one with the degree, however, I do.  Today I started at 4:30am with Cianna crying softly because she can't move. So then I said to a nurse after a discussion, "I am refusing meds at 9am until I speak w/ the neurologist."  This is scary to do as now adays the officials can say, "You are an unfit parent and CPS is coming to take your kids away."  Well thank God Neuro came at 8:30am and said, "Yes. Let's skip the morning dose, as yes your child does look like a noodle and needs these levels to come down a lot."  Hopefully tonights dose will be a lot lower as well as the doses from now on.  We are now out of the PICU and have no more PIVline as well as no more oxygen tubes, and no more NG tube.  She ate 11oz. in 45min. last night!!! I haven't seen this since I can't remember when. Today, not so much.  Thanks for the prayers.

Where We R At Today

Cianna was extubated yesterday.  Today they took off the EEG, I gave her a shower cap shampoo. (it is a showercap that you warm up then put on and it has a shampoo in the cap that you do not need to rinse. Her hair is still sandy, however no more glue like spots on her head. She did get a few spots that are really red as the skin breaks down with prolonged exposer to something touching it. :(  So Bacetracin for that.  Her NG tube came out.  We went from vapor treatment in exterior oxygen (the one on the nose) to only tube there.  HO2 turned off.  She was biting on a blueberry lollipop last night ,not actually breaking off pieces.  Today she had some peaches baby puree off of a spoon, she is sooo tired. Joe and i are taking an epilepsy class @3pm, then he goes to work.  We are blessed to have him for our daddy, husband and provider.  We will be attempting bottle feeding tonight and some more baby food.

Sunday, May 13

C-ianna is still in PICU with a breathing tube and an NG tube.  There was talk about removing the tube, but due to swelling in the esophagus, she's being given a round of steroids for 24-hours to see if the swelling will go down.  The EEG isn't showing any abnormal brain activity, so the seizures are under control.

She also has a tube in her shoulder area for drawing blood, so she doesn't have to get poked every day.  (She's going in for minor surgery tomorrow (5/14) to put it in a better location....)

Lin has no access to a computer unless the library is open, which is only during weekdays and every other Saturday from 1p-4p.  So returning emails and updating this blog are not convenient.  (I'll be happy to share any comments with her if she hasn't read them by the time I speak to her.)

There is a Ronald McDonald House right inside the hospital, as well as one down the road a bit.  (Children aren't allowed to stay at the one within the hospital, but can stay at the one down the street.  I think Lin is on the waiting list for that one, so that Joe and Joey can come stay with her.)

Outside of the old hospital Inside the new hospital.

The nice (?!) thing about all of this is that they are in Indy, therefore near friends and family.  I love calling on Lin to check on her and she wants to call me back because someone is there visiting!  (Give her a hug, too!)

I Don't Want To Do This Again

This just sucks!  After talking thouroughly w/ the neuroligist specialized in epilepsy here at Riley,  I think I get it that the Keppra dose was probably not doing much and the pheno... was doing all the work. We are starting topamax tonight. 1% SIDE EFFECT KIDNEY STONES.  Any history of kidney stones... yup. so we shall see. I guess we will have to accept in life that w/ Cianna, we might always move 2 steps forward and be greatful for them prior to the 1 step back (that feels like square 1.)

Maybe we shouldn't have changed those levels....

Christianna is in the hospital again.

I believe her neurologist wanted to bring down the level of Keppra she was on, since it was such a high level, and I believe that was done this past Monday.

Last night (Wed), Lin noticed C's leg twitching.  She gave C her meds and kept an eye on her until about midnight.  Around 3 am, Lin woke up and C was seizing.  Lin gave her the emergency meds and waited about 3-minutes, when she called 911.  She let the dispatcher know what was going on and the she didn't know how long she was supposed to wait for the emergency meds to kick in.  The dispatcher said not to worry, someone would be sent out and that they might night even need to take C anywhere.

Unfortunately, they DID need to take her to the hospital, where she is in ICU and still seizing.  :-(

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I spoke to Lin this evening - they got Cianna to stop seizing, but when they lowered the meds, it started up again.  She's hooked up to an EEG and is sedated.