Weekend Wrap Up

Gilly just left.  Ry is taking a late afternoon nap. So I figured this was my chance to update everyone. 
On Friday Ry did indeed get a new pump.  She did well through the procedure.  We asked how her heart reacted when the pump was momentarily disconnected and they said it kept beat strong!  Of course, it still could not support her but only for minutes.  It's somehow reassuring to know her little body is still fighting!
Since Friday we've battled familiar issues. She is still very puffy and we are slowly removing it, but at a slow steady pace.  She had accumulated a bit of fluid in her chest (not surprising), but we had hoped the diuretics would continue to pull it off. 
This afternoon we are beginning to think we will have to do something further.  Ry's been super agitated and just not feeling great.  She's grumpy and uncomfortable which just breaks our hearts.  She is smart enough to grab her central line and pull on it yelling for medicine.  We have obliged when we can, but just wish we could nail down what it is that's bothering her.  Her breathing is more labored, her sats are down and her labs are trending down a bit.  These few things are all leading us to think we'll have to lace a chest tube tomorrow sometime to drain some of that fluid.  I guess it's just too much.  I'm so heart-broken we'll have to put her through that pain again (it will be the super painful kind), but I'd love to get the fluid off so we can continue to move forward.
We had lots of great visitors here on Friday all cheering Ry on for her pump change.  It's so nice to have such a great support system.  Gilly and I are so lucky.  And Ry is so loved.
It's quiet here now again.  We'll miss Gilly this week and always looked forward to our Fridays.  Please continue to pray for Ry this week.  I'll try to update again soon!!