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.
"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.