icu update

The nurse was cleaning his mouth out, and he was fidgeting, so I got up to stand by him and offer him support. I watched him open his mouth and turn his head, and his little tongue thrust reflex kick in. He looked like he was rooting around for food.
It broke my heart.
I just want to feed my baby and hold my baby and take care of him and make him well. I honestly don’t feel like I have the strength to keep sitting here and waiting, but there is NOTHING else I can do. I don’t want to deal with anyone or anything anymore. I wish I could just go to sleep and wake up and have this be all over, and my baby would be well.
He had an episode today where his blood pressure dropped for no known reason. It righted itself within five minutes or so, but this keeps happening and its really scary.
Every time I start to feel really optimistic and hopeful, he takes a step backwards. And the results they told us we would have in 48 hours? We still don’t have. (It’s been 72 hours) they are now saying “hopefully tomorrow’
We were backing him down on the ventilator thing today, but Ollie is still having issues utilizing his O2. He’s getting plenty, but it’s not being properly utilized inside of him, so they are leaving the ventilator thing on him. They increased his Milrinone to help with this. Which means they haven’t backed off on the other meds either. So we are going into tonight pretty much exactly where we left things this morning, only puffier. Ollie is swollen and puffy due to everything they are pumping him with.

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