4th Birthday Photo Session

4th Birthday Photo Session

Thursday, September 9, 2010

Steps Forward, Steps Back

The Bean is doing well. She's being monitored for narcotic withdrawal.  Her G-Tube has been leaking severely.  The surgeon team came by to address her G-Tube, they made their changes, and then we started feeds.  6ml/per hour.  After the hour, her nurse looked at the G-Tube to realize that most of the formula leaked out, probably all of it.  Long story short, they tried to put in a NJ  (nose-to-the intestine tube) tube in, it did not work.  ENT came by to assist and said they'd prefer not to put anything up her nose.  They wanted to put in an OJ tube (mouth-to-the-intestines tube), x-ray showed it only went into the stomach, so we decided to try it out, while we waited for surgery to come back to work on the G-tube again.  They did come back and we put in a smaller Mic-Key, "button" and a larger tube.  Essentially, the thought is that the tube has been rattling around creating a bigger hole, and needed a bigger tube to fill in that void. 

The Bean had a really great day though.  She's made a lot of progress in a short period of time.  The goal is to work on increasing feeds and decreasing oxygen.  She might get moved out of PICU tomorrow, and up to an intermediate care level, where our favorite nurse lurks!

The Bean will be visited tomorrow by "Speech" -- to help with feeding/bottling.  We're going to reintroduce the bottle and see how she does. Andi's oxygen level has to be below a certain level before they'll even attempt to reintroduce the bottle.   We've also put in orders for her hearing screen.  We had an appt. scheduled for next Monday, but since we're in the hospital, I highly doubt we're going to make it to that appointment!  So, the thought process is to have it done while we're recovering in the hospital, so we can determine how much and to what level Andi can hear.  That way we can develop a course of action quickly, and if we can improve her hearing, we get that going as soon as possible - so she can start making brain associations sooner than later.

The Bean's chest is recooping.  She's off the narcotics, yet on med's to help her get off those.  She's getting off of a diuretic called Bumex and onto just lasix.  She's doing well, but still has quite a way to go until she's free and clear.

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