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....

Monday, September 26, 2011

Day 14 - Midnight

I got home really late tonight.  It was an interesting day.  Since he had his arterial line out I was able to hold him!  This was very exciting.  I hadn't held him in exactly 2 weeks.  Can you believe that??  It's been TWO weeks since we found out about his ALCAPA.  Insane.  I feel like I've been living in the PICU for awhile now but at the same time I feel like his surgery was just the other day.  As I held him I couldn't help but think about how far we've come in the past two weeks.  He slept so soundly the entire time I held him.  It was so incredibly nice.

Holding Trey for the 1st time in 2 weeks!

He still came with a lot of tubes and wires though! 

Unfortunately, he started crying as soon as we got him situated back into his crib.  The nurse and I couldn't get him settled and he didn't respond to the medications Holly, his nurse, was giving him.  Dr. Stotz was the attending on call and he came over and started pushing in small amounts of versed and fentynal every 2 minutes until he finally calmed down.  They think that he might have had some withdrawal still and it hit him all at once fast.  Giving him small amounts of those medications leveled his withdrawal out so that he could be comfortable but we're back to weaning slowly, while also using methadone and morphine.  Now tonight they just have to keep a watch on his breathing because these drugs can also slow your breathing down too much.

Poor kid - sucks that he's been alive for so short of a time and has already has had to experience more than many of us have in many years.  Heart failure, major heart surgery, heart lung bypass, being on a vent and now drug withdrawal.  Ugh.

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