Thursday, September 11, 2014

With Good Comes Bad..

So with good news comes the bad.  Lets start with the bad and also scary.  Raygen's x-ray today showed fluid build up in chest again.  This may explain why she has been so fussy the last day or so and why she is having such a hard time sleeping.  Dr Park added another diuretic to Raygen's medicine routine so now she is receiving 3 different diuretics 7 times a day.  That is a lot of peeing for a 3 year old.  Raygen will have another chest x-ray Tuesday morning and if it is the same or worse we will be heading to Children's to be admitted for iv diuretics and possible chest tube :(  If the x-ray is better then we will head to Tacoma so Raygen can have blood work because when children are on high doses of diuretics you have to watch their kidney functions among other things.  So it is scary all around.  The diuretics may get the fluid off, but may damage her kidney's in the process.  This is a step back, but right now were home so I'm trying not to panic.  It is hard though.  I am watching her closely to see if I see any changes in breathing or color just in case she worsens before Tuesday.  This is one reason why kids after the Fontan are still "home bound" for awhile because any cold or sickness could lead to more fluid build up and their body is using all it's energy adjusting to the new blood flow that it is really hard to fight off anything.  On the good note, Raygen's warfrin level is good.  So today was a little stressful and not the news I was expecting, but I'm hopeful the extra diuretic will take care of the fluid so we avoid the hospital.