We are at Johnson City Medical Center Children's (www.msha.com/ch). We are enjoying this smaller scale hospital way more than a place like Hopkins bc the care is incredibly more personalized and even though we are the first noninvassive (NIV) Spinal Muscular Atrophy (SMA) family they've dealt with they are amiable to our deman...err... wishes. :) I had a couple of great conversations with Dr. Scroth (Peds Pulmo @ Madison, WI) about Emily's care here and that has been reassuring, to say the least. They're using Dr. Scroth's protocols for SMA kids and since Respiratory has never seen a Cough Assist we're training everybody -- ha -- too funny.
Anyway, Emily had a restless day of coughing and coughing and coughing some more. She had a rough time holding her sats for a while, but her end-titles and electrolytes and all the other stuff looks good, so we're doing the right stuff. We only know this drill intubated, so this is somewhat new to us too. Thanks for your prayers and notes of encouragement!!
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