9:00pm update:
Job had a really, really good day today.
We took off his hi-flow cannula right after rounds and he never even skipped a beat today, breathing like a champ. No problem whatsoever.
He had a number of moments throughout the day where he was alert. I even got him interested in a book enough to turn two pages himself. We watched some movies and talked a lot and pointed to our various body parts, but every activity is exhausting and needed a nap afterwards.
Pooping is still a cause of agitation for him but he's almost regular again and after making a dirty diaper he was like a whole new kid for a few hours. He was even pretty happy sometimes. I got a few half smiles.
He went back on insulin for a bit but it's off again. Every time he gets one of his steroids he spikes and then we chase it but I think it's happened enough times that they're comfortable saying it's the steroids. Most if not all of his immunosuppression meds can affect his blood sugar but they don't anticipate us needing to check his sugars at home.
His feeds are going well and they allowed him to begin drinking clear liquids. He nicely, if lethargically, signs "please" for his water.
He threw up twice but why is hard to say. I think it's likely related to his constipation and/or a dilaudid wean side effect.
His cough got better through the day. When he was calm and sitting up he could go a few hours without coughing. It's still very dry and he has no other symptoms, so we're all hoping it's merely an effect of hi-flow.
He got a bath and new clothes and smells so fresh and clean and looks so much better.
11:00am update:
Cuddles!
Job is off of even more support today. It's amazing! No epi, no insulin, no milrinone, NO RESPIRATORY SUPPORT. We'll see if he can stay off of all of it, but it's exciting to even try.
He started coughing last night. We're hoping that coming off of hi-flow helps, because it was drying him out (it's essentially like a constant gust of wind in his nose). If he doesn't stop coughing by this afternoon we'll have to do a viral panel and figure out if this is a cold.
He is really restless and grumpy still.
He is super shakey and just threw up, probably narcotic withdrawals.
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