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Posted Nov 19 2009 10:02pm
I know I left some of you confused. Ava went downhill fast on Friday evening and what I thought was a trip for fluids turned into another stay at hotel childrens. I'm still confused and waiting for more info. Some of the tests are highly specialized and will take up to a month for results. Ava's discharge summery is this:
"19 month old female with congenital syndrome unspecified consisting of CP, macrocrania, laryngomalcia, OSA, GER, feeding difficulty, seizure disorder, cyclic fevers, and polydactyly. Now s/p supraglottoplasty, on home oxygen. Positive hemoccult. Renal and CBC showed acidosis, neutrapenia, bicarb 17, glucose 46 and moderate ketones. Positive urine organic acids. Will f/u with genetics in the next few days for metabolic disorder. Will f/u with GI in 3 weeks.

Cardiac: Tachycardia to 160s noted when asleep despite apparent euvoemic status; will follow. ....."

It went on and on... The nurse got Ava's bicard numbers wrong. Ava's were low, not high. I also know that she has chronic low white counts since she's been seen at Cinci Childrens in May. They're looking into why. Lovely:(

Ava is doing well today. Her walker was here when we got home last night. She's already walked with it a little bit. Her energy is still low. She's happy to be home and being her spunky little self. Very smiley.

Thank you to all the prayers and help!! Prayers worked:)

Going for a ride from liberty campus to base.

The transport team was very nice. they've traveled all over the world going to get airway patients for Dr C and all. Wow! They came to check on her. Ava actually slept almost the entire time we were in the ambulance.

I think she had a baby crush on him! The only person she waved bye-bye to.

Have I ever mentioned how much I love this girl? She's my sweet, brave, goofy baby.
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