03-16-12 UPDATE — CPMC/CHONY PICU – Day 9

Today was a disappointment. The medical decision was that today was not the day to pull the tube for several reasons and mostly because they would be more comfortable doing it on Monday so that everything is most setup for Faith to be successful. We had a very long conversation with the PICU Director, who also has a son (age 10) with Downs Syndrome (maybe a future love connection). We are very satisfied with the care Faith has received, we are not thrilled with the communications (or lack of) we have been having with the PICU attending doctor. We should not have been the last to find out that today’s procedure was canceled along with many other incidents this week.

On a positive note Faith got a real good washing today (amazing how stinky a kid can get just laying in bed). She was also visited by her Nana and “favorite sister” Abbey. We will put on the green with her and celebrate St. Patty’s Day.

It should be a quiet weekend of maintaining her and stating to turn down some of the ventilator assistance more.

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