42

42.  FORTY TWO, you guys!!!!!  You'll understand my excitement better when I tell you early last week her chest output was roughly 1700 milliliters.  Since pulling the breathing tube, we have seen a steady decline, starting Friday (the day we submitted all our paperwork to CHOP).

Here are how the numbers looked each day.  This is the total chest tube output from all five of her chest tubes.

1100 mL - Friday
650 mL - Saturday
496 mL - Sunday
400 mL - Monday
250 mL - Tuesday
220 mL - Wednesday
42  mL - Thursday

I believe breathing on her own, coupled with some small medication changes had a big impact on the decrease.  With starting feeds, we are also seeing improvements in her skin.  It's hard to see the feeding tubes and I am coming to the realization, that the possibility we go home on it is high.  Right now she is getting continuous feeds at 36 mL an hour.  Talk about flashbacks.  It was a little over 3 years to the date that we switched her to continuous feeds to leave the hospital for the first time.
Wednesday, the team decided that it was time to start diuretics again  We saw her urine output increase.  Then yesterday we went up on the dose and holy cow could you see a difference.  It looks like her eyes are resting on the back of her skull.  And as expected, she begged for water.  We were able to please her and give her as much as she wanted because the NG tube is sucking all the stuff out of her belly.  Overnight they stopped the lasix drip in order to not dry out her too much.  We have been there (week 2) and it did not go well!  It will be a fine balance.

Our next issue to tackle is the sludge that is resting in her stomach.  The bleeding has subsided and now we are seeing mostly bile.  Last night we flushed dye down her NG tube, then took x-rays twenty minutes apart.  We were looking for an obstruction in her GI track.  Usually they would do an upper GI, but in Lucy's fragile mental state right now, this was our best option.  The dye made it's way through no problem.  We'll begin to clamp the NG suction for an hour at a time to see if she can handle it.  If she does we'll increase time clamped, until we can remove it.

With the help of some anxiety medication, Lucy has been better able to handle the commotion that is ICU.  It helps a ton that her nurses are so diligent about who is let into her room.  We have also tried to have minimal procedures this week.

If I said it once, I'll say it a million times, we can't thank our prayer warriors enough for their diligence.  I truly believe our prayers were answered as our trip to Philadelphia has been put on hold.  We will continue to keep CHOP informed on Lucy's progress and if the need changes we will reassess, but for now we are staying put.