Errrrrrr..E.R. (Grumbling)

Well let's see it's 2:30 in the morning.  We are at Primary Children's E.R.  We have been here since 10:30 PM.  I'm tired, Ellie is grinding her teeth (she is in pain).

Let me back up...

I said in the last post about her seizures getting better when we did the bowel cleanout.  Well they did for a few days, but then they came back.  THey are not quite as long as they were before the cleanout, but they are still big and they are still a lot more than she was having a few months ago (we were down to only a few a week).  Now we are up to 3-5 per day.

We thought maybe since the bowel cleanout seemed to help we would go down that path.  We have since been giving her daily suppositories instead of every other day and yeserday I started her on Culturelle twice a day.

She has a had a cough for about a week now.  Nothing bad.  Sunday night she was grinding her teeth, which usually means ear infection.  I took her to the Dr. on Monday.  He didn't see an ear infection, but one ear looked different than the other one.  He wrote a prescription for ear drops.

Tues and Wed she was crying at school.  She really doesn't cry very often, so you know the pain is bad.  SHe was also kicking her legs, which usually mean she needs a diaper change, but she didn't need one at the time.

Wed night she was having a hard time getting a deep breath.  It seemed like she was in pain breathing.  Her heartrate was in the 160's (high) and her temp was 99 (high for her), her O2 was 94% (which is fine).

Because of the labored breathing we decided to drive her to PCMC.  It was snowing horribly.  From SOuth Weber to Farmington It was really really bad.  I could not hardly see at all.  I debated pulling over and calling an ambulance, but decided the ambulance wouldn't be able to find us and then how would we transfer over into the ambulance.  So I decided to keep going.  I had not been in that bad of a snowstorm while driving since I was on my honeymoon.  Everything was white.  It was so hard to see where the road was.  THe super scary part was it felt like I was just sitting in my car, but not actually moving 35 miles per hour.  Typing that now sounds kind of fast.  I was following a car because it was easier to follow their taillights than find my own way.  I said several prayers.  THe snow did not get immediately better, but eventually it did.

When we got off on Beck St. the power was out.  So I had visions of arriving at the hospital and them examining her with a flashlight.  But once you got into downtown SLC the power was back on.

Once we got into the ER as I was telling the Dr.'s the story I mentioned that the other wierd things for today were...SHe gets a suppository every day and she poops every day.  Today she got her suppository but did not poop.  However, we started culturelle yesterday which could mess up the schedule.  Also school said her pee-pee diapers smelled very strong today.  Also tonight she had some white discharge in her diaper area and
 her front part of her bum was red.

Well they did chest x-rays and swabbed the discharge.  THey tried to cath her for some urine but she was too swollen.

The nurse practicioner asked if I was worried about someone abusing her...I said no.

Anyway, they said the chest x-ray looked the same as it did in July when she came in for chest congestion but went home without being admitted (that was when I was in California).  THey came in to swab the vagina for bacterial overgrowth.

I don't know any other test results.

We wait.

WHile we wait, I can tell you about our visit to neurology yesterday.  I told him the whole story that you ahve read in the last 2 posts.  He asked if anything in her diet had changed I said we had changed brands of calcium, because we couldn't get the old one anymore.  He said high or low calcium can definitely cause seizures.  Well coincidentally I already had labs called in to get done that same day while I was at PRimary's.  THe dietician was going to check calcium, electolytes, metabolic panel, etc...  So I called the neurologist to talk with him this morning about the results.  THey were fine.  Blah.  I really wanted them to be off.  THat would have been an easy fix.  SO we decided to wait uintil this current illness is over.  See what happens to the seizures then make a decision.  I am leaning toward the ketogenic diet (low carb, high fatty acid).  BUt there is a new seizure medication unlike any of the old ones.  Or we could turn the Vagel Nerve Stimulator back on.  I kind of think the seizures will go back down when she gets feeling better.  BUt it might be wishful thinking.

Back to the ER.

Oh I wish she would stop grinding her teeth.  It it starting to hurt my teeth.

Ta ta for now.