almost breathing on her own

Saturday and Sunday were very uneventful.  A much needed calm break from the craziness that has been the last 30 days.  It's hard to believe it has already been a month and we've packed three visits to the operating room and two visits to the cath lab.  Lucy is a super trooper.

The team made very minimal changes over the weekend except for her ventilator setting.  Over the course of 3 days she was able to move to CPAP pressure support.  This means Lucy is initiating every breath and the ventilator is giving support at a preset pressure value.  Once there, the only thing to do is ween her sedation and remove the tube.

The team gathered this morning to discuss what are Lucy's next steps.  Above all, is to get her off the ventilator, but a bigger concern is the amount she is draining out of her chest tubes and the implication that her lymphatic system is not healing.  The return to the OR twice last week were obvious stressors on her system.  However, the team is looking ahead, in the case we see no change. There were three options that were discussed the first (I can't remember the name) but it has to do with 'scrubbing' the lungs to stop some of the leakage.  The second is a fontan take down.  The third, a procedure where they technically glue the holes that are leaking in the lymphatic system.  The third option doesn't seem so bad until you know that this is done at Children's Hospital of Philadelphia (CHOP).  Yikes, right!  Anyway, all of these options are on the back burner until we've given Lucy a chance to breathe on her own.

After contacting CHOP, the team wants to see if we can find a doctor in the Chicagoland area that can shed some light on her lymphatic system.  There may be a diagnostic test that we are able to do in the hospital which would provide initial information we can then send to CHOP.  Any diagnostic test, would require Lucy to be intubated, so we want to see if that can happen by tomorrow and then we would pull the tube.

We know you are all praying, so here is our specific prayer request:
~Lucy can tolerate breathing on her own
~Lucy's lymphatic system can start to heal once she is off the ventilator and there is a drastic decrease in her chest tube drainage
~Lucy's blood pressures and oxygen saturation remain stable through any changes we make

Then they cried to the LORD in their trouble, and he delivered them from their distress.  He made the storm be still, and the waves of the sea were hushed.  Then they were glad that the waters were quiet, and he brought them to their desired haven.  Psalm 107: 28-30