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 - 2:15 pm - A day of PEE!

28 hours and 13 minutes!!!  That's how long Trey has been off ECMO.  WooHoo!  It's a huge step in the right direction!  The goal in my head right now is just to be able to get off ECMO and stay off of it.  Dr. Shen said that if he can keep his vitals strong enough to stay off for 24 -48 hours then I can breathe a sigh of relief that he won't have to go back on ECMO (although nothing is really a guarantee).

His numbers did fine overnight and have been slightly better than when I left last night.  His LA pressure has gone down, which is a good sign.  When I left last night it was about 22-26 and today it's been hanging somewhere between 16 and 20.

Today he is receiving Diuretics in order to reduce his swelling.  The plan is to close his chest tomorrow as long as they can get his swelling to go down.  

So today is going to be spent encouraging him to pee as much as he can.  His nurse, Hannah, had already given him a pep talk this morning before I got here.  It has been raining today and it took me about 1 1/2 hours to get to the hospital!  270 and the DC beltway were a mess!  It's been really nice to have the same day nurse with him since he's come out of surgery.  She's really gotten to know him and is right on top of his care.  She knows his numbers and where he likes to hang out so if something goes a little awry, she can respond very quickly.  I feel as though we can really trust her... even if she is from West Virginia ;-).

The other thing I'm doing is waiting to hear about my cousin Erica.  She went into the hospital yesterday to be induced with her third child, a girl, and is still in labor.  She's progressing very slowly so I'm definitely hoping that things have progressed more since I talked to her this morning.  This morning she was still only at 2 cm but they were about to give her more Pitocin so hopefully that will get her going!  I can't wait to see pictures of her once she gets here!

Not sure how long I'm going to stay at the hospital tonight.  I'll post an update later tonight about his status or if anything changes in the meanwhile.

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