Konner has been feeling more tired since Thursday.   Friday he came home from school just exhausted- low grade fever.  We quickly headed for labs; hoping we were not dealing with same thing we went thru 2 months ago.   His hemoglobin was low; but not dangerously low.  But his exhaustion was severe. Saturday he got worse and was just so tired- spike a little higher fever.  We ended up in the ER- full work up.   Bloodwork trending in wrong direction.  We went home to rest, monitor and have labs on Monday.     Konner rested on Sunday, watched online church, Sat outside for a bit and even threw a few bean bags.  It’s followed by extreme exhaustion.  We had Monday morning labs; showing his hemoglobin still decreasing, at a 10. (With his Fontan anatomy in his heart- he really should be closer to 15 for hemoglobin).  He’s very anemic.   His bilirubin is 9.9 (never been that high in his life).  So he’s jaundice; liver is congested; so it works harder to metabolize it.  

He’s eating, drinking, laughing and still praying.  We pray every night that he wakes up feeling better!   

He has no reserve energy.  He eats- he’s exhausted, he walks up stairs and he’s panting, his joints ache.  He’s tired.  But yet we are trying to enjoy every minute.  

Lots of Doctors are discussing the right moves.   We are in a waiting game.  When it’s right time to give blood transfusion?  Will something else make him feel better?  There’s so many pros and cons to everything.  

Prayers for strength for mind, body and soul.  He’s staying in a pretty good mood.  He’s a bit frustrated as he has to postpone his drivers ed class for the 3rd time now!   He just wants to feel better!   

So I leave you with this song I sing all the time.  If you can just imagine me singing this!  I’ve been on my knees many times singing this song. It’s called “Hes my son” by Mark Schultz.  

https://youtu.be/bBd-xzrNFkc?si=YFg9qk8H4dCyKVWv

Ps: thanks for all the kind words, prayers and calls.   Life is coming at us fast and the waiting game is slow.