Wednesday, September 22, 2010

A quick update for now ....

For those of you who don't follow us on Facebook, Emily was hospitalized this weekend. She had seizures all day Saturday and then was okay Sunday morning. By Sunday afternoon she was back at it, ending with a 4+ minute tonic-clonic (Grand mal) seizure at 7pm. I gave her Diastat and watched her crashing. I called 911 and the ambulance took us to the local hospital. Turns out her Diastat AcuDials were set incorrectly! Instead of her normal dose when I administered it, she got DOUBLE the dose. By the time we got to the ER her blood pressure and pulse were tanked and she was non-responsive. It took 5 hours, a ton of fluids and some IV something (Dopamine perhaps?) to get her back to normal numbers. Then her blood sugar tanked and we had to follow that with D25 boluses. The blood sugar drop is her metabolic disorder acting up, because of the other drama.

She was finally stable enough around midnight to be transferred by ambulance to children's hospital. We did an EEG Monday which showed seizures in the left temporal region, same as her last EEG. Some stayed localized and some were spreading to generalized, although we didn't actually SEE any seizures during the test. They also saw slow spike waves, which officially got her diagnosed with Lennox Gaustat Syndrome. :( We are starting her on Banzel for this as soon as our pharmacy can get it ordered and compounded.

We don't get to UCLA Epilepsy Center until October 7th, so we are home and waiting anxiously. When we got home yesterday she was still a mess. Unable to hold her head up, or sit unsupported, and all she was doing was crying. Arching, stiffening, and whining. Looking back, I'm sure she was having small seizures all afternoon and evening. This morning she is sitting up unsupported and her head control is pretty decent. Thank goodness! We had orders that if she wasn't improved by this morning we were to take her back to the ER. In which case I was going to load us up and drive to UCLA ER just to get her in there quicker!

We have an ortho appointment today to do xrays of her hips and spine. Her hips seem to be bothering her a lot lately. We know she has mild hip dysplasia, so I'm nervous that it's gotten worse. And she has developed a slight curve in her spine, so we are getting a baseline xray to check for scoliosis.

This will be an interesting appointment, as ortho is notorious for making you wait 4 hours or so in the clinic! She is grumpy, not going to be happy to be back at the hospital, and unable to bear weight while standing. That will make for an interesting hip xray.

I will update more and post pictures, but I wanted to give a quick note!

16 comments:

Jessica mommy to Alex/ RTS said...

Your in the thick of it. THinking of you. Always.

Becky said...

Hang in there! Praying for you. xo

Becca said...

Oh, poor little thing!! I'm so sorry she's had to go through this. I hope she can get some relief soon. :-(

Zoey's mom said...

Sending love and prayers from up north.Wishing you could get into UCLA sooner...sometimes helps if a doctor makes the call,physician to physician.Emergency basis.That is what happened with us.Just a thought.

Reagan Leigh said...

Wow...scary. I so hate seizures. I'm glad that she seems to be doing a little better now. I think Heather might be on to something...next time get that ambulance to head to UCLA!! (No scratch that...hopefully there is no "next time"!)

Junior said...

Keeping youguys in our prayers. big hugs

HennHouse said...

Praying for you all...

The VW's said...

Glad to hear she is doing better now....that must have been a scary day for you! Hang in there Momma! Love and Hugs!!!

SECRET PEPPER PERSON: said...

Poor Sara! Poor Emily! I am so sorry this happened. I hate seizures! Keep us updated about the hips...hope that turns out ok!

Debbie said...

Wow...so sorry to hear of this.

I hope the Banzel works for those seizures...they are suppose to work well for LG (Hudson doesn't have LG and it made his seizures worse!)

Hang in there!

Lacey said...

She's saying she needs us to come out and visit. Makayla now has outfits that Emily and Ella both have. They'll be so cute together!

Elizabeth said...

It was good to talk to you today and I hope that you get answers when you visit UCLA. I will be thinking about you and Emily and praying for you, too. Please let me know if there's anything at all I can do to help!

Alison said...

So sorry to hear she has been having a rough time. I hope the appointment goes as well as possible.

Rebecca Jackson said...

Praying for you!

Christy said...

Oh that sounds so awful and scary - for all parties involved!!! Making that 911 call is such a horrible feeling. I had to do it once and freaked out and hung up. They called me right back and got here in just a few minutes. Scary stuff. I hope her appointment today went okay.

Know I'm thinking of you.
~Christy

Jenny said...

Oh this just made me ache and cry for you and Emily. You're in our prayers. I hate seizures, but sure love you. Hang in there. This too shall pass....