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....

Saturday, October 29, 2011

Day 3 (home, take 2) - Exhaustion is making me blank on a title for this entry...

I actually got 8 hours of sleep last night!  It was great.  I still was pretty tired this morning though.  I'm definitely a night person though so I'm tired most mornings, even before this all happened.  I just have noticed that mornings post-ALCAPA are even harder.  I wake up with a drugged, this really isn't all happening feeling.  Trey did throw up again this morning though so that definitely got me up and moving pretty quickly.  This new formula stinks.  It smells like really awful dog food and it smells awful coming up.  It stunk up the entire room for more than half the day.  I don't know how I'm going to get through the smell!  It makes me gag.  I feel as though the entire house stinks.

The nurse came this morning and I saved his outfit that he got sick on because I was nervous about some pink flecks that came out of him.  She said that that color did not exist naturally in the human body so it had to be some of his medication.  I'm hoping it was the clindamycin!  I was afraid of it being blood (shrug, I didn't know!) and she said nope, no way.  Thank goodness... because the last thing I needed today was to go to the ER!  I had Bryce's Halloween party at school to do!  He lost a little weight since last week's weigh in on the nurses scale.  Hopefully the fortified formula will help him gain some.  She'll be back on Tuesday.

My mother in law came to watch Trey this afternoon so that I could go do the Halloween party.  Unfortunately, he threw up all over her right before I left the house.  Seriously, I went to grab the doorknob to go and blech!  She picked him up right after his tube feed ended and he projectile vomited all over her shirt and the couch.  Yuk!  So we cleaned up the couch and my father in law brought her a new shirt.  Yes, it was gross.  I couldn't believe it though... right as I was leaving!  Trey definitely has a way of making things a little difficult! ;-)

The party went well and the kids all had fun.  I haven't had time to get the pictures off of my camera but I'll post some of Bryce when I do.  Right now I'm tired and just don't have the motivation to do it.  I absolutely love organizing and doing the holiday parties at school but it does take a lot out of me.  I don't know how teachers do it day in and day out!  I only planned and did an hour of school and I was drained!  Teachers definitely have a gift.  Off to get some shut eye.... yay!

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