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 1, 2011

Day 19 - 8:50 pm - Brotherly Love

Today was another good day.  I was exhausted this morning so I slept in until about 10 am.  Daddy and the boys went to breakfast at church and then to soccer practice.  We then all went to one of Bryce's friends birthday party at Chuck E. Cheese.  It was nice to get away from the hospital a bit with the boys and to watch them have such a great time.

Cole proudly showing me the ticket he found on the ground outside of the Ticket Blaster Booth

Afterwards we went met up with Nana, Grandaddy, Aunt Kari and Uncle David at the hospital.  Bryce met with the Child Life Specialist so that he could be allowed back into the PICU.  They met in the playroom and talked about what to expect back in the PICU.  She then walked him back to Trey's room.  Unfortunately, Trey was sleeping when Bryce got there so there wasn't much to do.  Bryce got bored quick - like less than 2 minutes - and then went back to play with the video games in the playroom.  About 10 minutes later he asked if he could go visit Trey again.  I took him back this time and we gently woke Trey up from his nap.  This time Bryce was excited to see his brother.  He was so sweet.  Bryce gently whispered Trey's name as he woke up out of his nap.  I asked Bryce if he wanted to see Trey's stitches and he said yes.  I showed him where they did surgery on Trey and Bryce took it very well.  Bryce got to hold his hand and we also sat Trey up so they could have some eye contact.  Bryce did a great job, he really is a fantastic older brother.

Cole isn't old enough to go back and visit Trey so he played in the play room the entire time.  It didn't seem to phase him at all.  He had a blast with all of the toys.

Bryce and Cole went home with Nana and Grandaddy and we stayed a few hours with Trey.  He slept the entire time.  He is now also weaned off the Versed completely but I think he is still having some withdrawal from it... very little though.  Every once in awhile he would wake up a bit whimpering.  They are also weaning his Milrinone, a medicine to help his heart contract better.  Once he is weaned off of the Milrinone he will be off all of his continuous intravenous drugs!  He is still getting some antibiotics through his central line.  Tomorrow they are starting him on another heart medication that he will be taking orally.  I can't remember the exact name of it right now.  I'll have to get that information and the spelling of it tomorrow.

So basically, another uneventful day - great!  Not as fun as yesterday since he slept through most of it and we didn't get as many smiles but it was wonderful to see some brotherly love.

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