Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Sunday, September 25, 2011

Day 13 - 11:30 pm

Kelly and I got to go up and see Trey this evening after our family visit.  He seemed to be doing better than yesterday.  He was a lot more content for most of the visit.  There was one time where his brow really got scrunched up and so they gave him some medicine and another time when he got really upset and distraught.  That was hard to watch. 

Apparently he had another echocardiogram today and his ejection fraction was about the same as the other day.  Not too alarming though since it's only been about two days since the last one.  I wouldn't really expect too much of a change.  The recovery of his heart is going to take awhile - about a year or so at least. 

While I got some great sleep last night (12 hours!), we've had a really busy weekend and I'm really tired right now.  Time for bed! 

Trey and I
(the pics are a big grainy because I didn't want to startle Trey with the flash)

Kelly and Trey

1 comment:

  1. Hang in there, I had some crummy med stuff go down when I was little too. Looks like he's well on his way to being a super duper bionic baby like me :)