Cardiology Update

Owen had an echo and cardiology appointment first this this morning.  I am a little on edge lately, not knowing what the echo will show.  If anything looks "off" on his echo, I know that will mean an instant admission and starting IV cardiac meds. 

Last night, Owen woke up at 10pm and said he felt pukey.  I grabbed a Harkins theatre cup out of the bathtub and he filled it up to the rim.  I felt so awful for him, but he felt fantastic afterwards.  We chatted for a little while until he drifted back off to sleep.  I was worried for a quick second, that he may have caught a bug since we haven't been as isolated as we should be lately.

I was relieved when he woke up feeling like himself and was so excited to go see Dr Stock.  As soon as we enter the office, Owen is saying hello to everyone.  His weight was 36.5lbs, 42" and his sats were around mid 70s.  He was so excited for his "ecto".   We watched Spiderman for 45 minutes and he gave us a play by play of the movie as we watched. 

The echo looks unchanged.  So happy to hear this!  His liver is down to a 3-4, which isn't ideal, but nothing too concerning considering.  We are going to go ahead an stop the Viagra and see how he does.  We have two cardio visits in November, an IVIG infusion, and then to Stanford in December.  

We are just crossing our fingers, praying, and hopeful that his heart will come before he gets sicker.  Owen understands exactly what is happening, he likes to explain it to everyone that will listen too.  He is one smart little boy!!

We are off to buy a few pumpkins to carve tonight.  Our prayers go out to all of those on the East Coast.. be safe!