8/15 Update

It's been a wild few weeks.  As is generally the way, things get better, then worse, then better, and back again.  Patrick has been doing pretty well.  The doctors kept debating whether to keep or remove his PICC, so he put an end to the discussion by removing it himself.  He finished his two weeks of continuous feedings last Saturday.  They began compressing feedings and reached two hours, but he's been gagging and retching a lot so they kept him there for a while.  Even though he's still having issues, today, they moved him to 1 hour 45 min.  His goal is tolerating 1 hr feeds before he can go home.

They reduced his oxygen to 1/2 L (which is odd because they were going to send him home on 1L, but we'll see.  Things always change).  They ordered a chest x-ray because his work of breathing is harder, but it hasn't been done yet.  They also haven't done a recent echo, but will do one several days before they anticipate him going home.  Wednesday night, he spiked a fever (101.8), which had only dropped to 101.1 by 10 a.m., so they decided to run cultures and put him on antibiotics.  His fever broke yesterday, but he had another rectal temp of 101.1 this morning, so they gave him more Motrin, and he seems to be doing better now.  He's currently sleeping (yay!).

Developmentally, he's mostly sitting on his own (except when he gets tired), and he's back to smiling and flirting with the nurses, which means he feels better.  We are doing our best to make it through and just trying to take things as they come--one day at a time.  As always, thank you for your love, support, and prayers.  It helps more than you could ever know.