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....

Tuesday, September 20, 2011

Day 8 - 9:55 pm

Well, I am super exhausted.  I ended up getting about 4.5 hours of sleep last night.  My mind just runs and runs.  I feel as though I'm on auto-pilot most of the time.  Granted, things just blurt out of my mouth a lot of the time anyway but right now there are times I either can't think to even get something out of my mouth or I just say things without thinking whatsoever!

Trey did well today.  He's been pee'ing like a champ.  Before I left at 7 pm, I noticed that the swelling on the back of his head seemed to have gone down considerably.  He's still fighting sedation and there are times when he opens his eyes a bit to take a look around.  There was one time today that he furrowed his brow, which usually means they are in some pain, and that broke my heart.  Hannah quickly gave him some more sedation and he settled down.  That's the one and only time that we've seen him do that so my hope is that he's as comfortable as he can be at this time.

We saw Dr. Futterman today for the last time before he goes to work at Children's Hospital.  He was the attending in the PICU when we got there and I can't say how incredibly fantastic he was to deal with.  He's been in the PICU multiple times since then just to check on how Trey was doing.  While we've only been there a short time, I'm already going to miss seeing him around.  He really made you feel as though we were all in this together - actually, all of the attendings (or intensivists) make you feel that way - but Dr. Futterman was Trey's first Dr. at INOVA and we hate to see him go already!  Thank you Dr. Futterman for being so great with Trey during his first procedures at INOVA!

Dr. Vish is our attending for the week and Hannah has been our nurse since gosh, seems like forever.  She was charge nurse when we came in last Monday and she ran his ECMO when he got out of surgery.  Then she's been Trey's main nurse on days since Friday till today.  She's off tomorrow until next week.  I don't know what I'm going to do without her!  She's so great with Trey and knows his vitals so well.  She's also great to talk to.  I've really enjoyed spending time with her (if that makes sense... kind of heart to enjoy yourself in the PICU!).  Plus she knows exactly how I'm coping with all of this so I don't feel like a bit of a psycho around her.  I take a lot of pictures and she tends to know what I'm thinking before I say it.  Yeah, tomorrow's going to be tough without her!

Well... it's off to bed now.  I've stayed up way later than I wanted to.  Tomorrow is a big day with possible closing or at least a cinching at 1ish! 

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