Saturday, July 9, 2011

Back in and not so well

Emily was re-admitted to the hospital on Thursday. She is back to retching, gagging, screaming. Her g-tube is draining so much that she is on an IV of fluids in addition to her TPN. Today she has had three horrendous episodes of what appear to be metabolic crisis. She screams hysterically, cramps up, her legs and arms get bent and stuck, she shakes and trembles, and drools and gags. The last time she did it today the nurse called the Dr's in. They immediately ordered stat labs to check her metabolic function and found her lactic acid to be high. They said it wasn't quite "acute" but was elevated enough to be concerning. It shows that she is verging on metabolic acidosis. She is stable and asleep for the night, and we are going to see the genetic/metabolic/mitochondrial team in the morning. Please pray for some answers. The neuro and GI still think that everything that is going on is a progression of her underlying disease. Without knowing what that disease is, it's hard to know how to treat or how far to push her. Please pray for answers and guidance!

15 comments:

Junior said...

Sara we are praying that you get some answers. Hug your sweet princess for us.
Lots of love.

Alison said...

So sorry to read this - will definitely pray for answers for your precious girl.

Hyper Aspie said...

I'm sorry to hear that you are back in hospital AGAIN!
Will definitely pray for sweet Emily. x

The VW's said...

This must be very scary for you! Praying for you, Emily, and the health care team! Hope you get answers and solutions soon! Love and Big Hugs!!!

Michelle and Sean said...

Continued prayers for you all. I think of you guys everyday and hope they can figure this out so she can be home with her family.

Shan said...

Praying, praying, praying!!! Wish I could give you words that would help... she is in our hearts.

SECRET PEPPER PERSON: said...

So so sorry...

SECRET PEPPER PERSON: said...

"Acetazolamide may also be a cause of metabolic acidosis."
She's not on Diamox for her seizures is she?

Rebecca Jackson said...

This just breaks my heart! Praying!!!!!!!!

Colleen said...

Praying for strength, guidance and answers!

Cathy said...

Please know that we are praying!

Buttercup said...

Adding my prayers!

Adriane said...

I'm so sorry for all that's been going on with sweet Emily and your family!! I hope they can figure it out soon, for all of your sake's :(

Donna said...

I'm so sorry for all that you and Emily are going through. Praying they figure it out all and keep Emily comfortable.

Debbie said...

I am so sorry to read this. Just wish and pray the doctors can get her comfortable and you guys can get a well needed/deserved break!

PRAYING....