Juggling

I feel like we are juggling.  I’m calm and relaxed when I don’t realize how many balls are in the air, but as soon as I realize just how many balls there are or another ball falls from the ceiling, I start to lose my composure. 

We are managing Matthew’s congestive heart failure with meds until we can get in for the heart catheterization to fix his PDA.  We are managing his reflux with meds.  And we have to weigh the benefits of all of these meds versus the risks to his one kidney.   So many balls to juggle.

We will discuss the skull surgery with our cranialfacial surgeon on Tuesday.  If he believes Matthew needs the craniosynostosis surgery and therefore the PDA fix earlier than Oct 20, hopefully he’ll have the pull to get it done.   Crossing my fingers.

Matthew still can’t seem to kick this cough/congestion, which is making his breathing more labored and causes his big heart to beat faster.  He’ll be more susceptible to illness as long as he’s got the PDA (and fluid in his lungs) but we can’t fix the PDA until he’s over all the illness.   Catch-22.

We have moments of despair, not knowing when or if we’ll turn the corner, when life will get less difficult.  But then Matthew shoots that ear to ear, dimpled grin, showing off his two new teeth and all 4 of us melt.  And tonight he actually seems a bit more active and feeling better!  Hope grows in our hearts.