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 7 - 2:30 am

Well, I am home for the night.  I debated staying over tonight so that if Trey had any complications I would be close by but I felt pretty disgusting by the end of the day and figured a shower in the morning would be good.

It was SO incredibly hard to leave Trey tonight though.  This evening he started moving around a lot more and even opening his eyes a bit.  I didn't want him to open his eyes and not see me.  With him moving around again it makes him seem real (of course he is... it's just when he's sleeping it's easier to pretend he's sleeping and feeling just fine).  There are at times he definitely looks pretty uncomfortable and that is sad.  It's really hard to see him that way.

After I get home, I have a hard time getting straightening things up and going right to bed.  I feel as though I need to wind down a bit.  It just seems as though there's so much to do but I'm not really doing any of it.  It's odd.  But it is 2:30 am not and I should probably be getting to bed.  I'm afraid of going to sleep and getting a call from the surgeon telling me there is a problem.  That's what happened this morning and it scared the bejezus out of me.

But before I go to bed, I will leave you with some interesting photos from this morning.  Dr. Shen was shocked that I was allowed in while they were working on him.  He was even more shocked that when I saw what was going on I didn't faint but instead reached for my camera.  Taking pictures of our journey definitely helps me cope.  I imagine putting together a digital scrapbook for him to see when he is much older.  Key words there are "much older"... that means he'll be just fine and come home.  I will be showing him all of these pictures in his teen years.

Anyhow, while the cardiac team was waiting to see how he was doing off the pump Dr. Shen told everyone to wave for the camera.  Hannah (our nurse) said that no other parent will have a picture like this... don't I feel special! ;-)

Here is Dr. Shen with the profusionists.  Dr. Shen asked them all to pose for this picture since they weren't included in the surgical photo. 

Dr. Shen is absolutely amazing.  I can't say enough about how great he is.  He seems like such an interesting person - a great mind, a great bedside manner, a great teacher and a great sense of humor.  All of the Dr's have been great and I'm very happy that I chose to bring Trey to INOVA.

Oh yeah, and wanted to leave you a sweet picture of Trey that I took just a few days before he went into INOVA.  Despite the distraught look on his face, he really did seem to enjoy his bath and liked splashing in the water.

No comments:

Post a Comment