Fontan Day 5: June 4 5:30 pm

Today Caden had another good day.  He got his central line taken out (in his neck),  but unfortunately they had to put another line in to administer meds as his left wrist IV was going bad so they had to pull that one out too.  This process is just awful to watch.  For all the heart families out there ask for J-Tips.  This needle is something that pops on the end and shoots lidicane into the area where the needle is inserted within seconds.  High tech, scary, and cool wrapped into one.  Although any needle = BAD in my opinion, this by far makes it easier to get into those little arms.  Caden had PT this afternoon and it went ok.  Caden just struggles with having enough strength and energy to stand up, sit up, etc.  I asked Dr. Cava tonight during rounds when are we going to get our boy back.  Dr. Cava's response was he is going to feel pretty crappy while he is on all these direutics.  His sodium/electrolytes are off, and unfortunately we need him "dry" so those pleural drainage tubes will dry up and we can remove them.  I know this is just par for the course.  I think the worst thing about all of this is when we ask Caden how do you feel he responds…..."I feel sad"……………gulp………….he just has such sad eyes, no smiles, it just breaks my heart.  This is when my strength starts to diminish.   You can only be strong so long….then I think it's ok to just realize we are human and life is hard.  I know……baby steps.  Each day will get better, he will get stronger.  We have so many things to be thankful for and we do thank God for that.  I pray for a little smile tomorrow.  A little glimpse that Caden is rebounding.

 CHW heart families going into the Fontan……take advantage of the family resource center (by the fishtank).  This wasn't around for the Norwood (and/or didn't need it), but they have all sorts of movies to check out for the kids to watch while they laying in bed recovering.  Amazing!  They think of everything.
Love always - Melissa and David

Libby the Therapy dog