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....

Wednesday, September 28, 2011

Day 16 - 5:00 pm

Well, about an hour and 15 minutes ago Trey woke out of his sleep with a shriek and then started crying.  It was definitely not a "normal" cry at first - it was more like a cry out or shriek.  It was scary sounding enough that I went out to get the nurse.  Although, unlike the other night, we were able to calm him down pretty quickly.  The doctor came over and ordered a EKG just to be on the safe side.  They also gave him some morphine, for any pain he might have, and some versed, to calm him down and to help with any withdrawal effects.

Trey getting his EKG

The EKG looked a little different than the one he got yesterday (they did one to look at his PVC's) so they paged Dr. Kirby, the cardiologist on call this week, to take a look at it.  Dr. Kirby didn't find it too concerning but they are now doing another triponin test to see if there is any more damage to the heart.  Triponins are special proteins that are found in muscles and the heart has specific ones.  If there has been damage done to the heart, for example a heart attack, this protein leaks from the cells of the heart and can be found in the bloodstream.  They had done a triponin test on him before and the level was 0.7 and today's test came back 0.9.  This is a slight increase but not enough to be significant at all.  The numbers are extremely low so he most likely did not suffer any kind of heart episode this afternoon.  Whew.  His scream definitely worried me.  Dr. Keller also mentioned that he might have heard a slight murmur that he hadn't heard before.  Dr. Vish, the attending on call tonight, explained that sometimes after surgery, the pericardium (outside covering of the heart) can become a little inflamed and this can mimic the sound of a murmur.  They are going to order an echocardiogram for tomorrow to take a look at everything as a precaution though.  He hasn't had one for 3 days now so it doesn't hurt to get one down.

This afternoon had been a little more alert so the Child Life department brought him a mobile for him to look at and enjoy.  He seems to like to look at it and listen to the music.  

This has definitely been one roller coaster ride.  Again, like the other night, I was just getting ready to leave the hospital and this happened.  My mother is coming to spend the night tonight and I thought it would be nice to get home and have dinner with David, the boys and her.  Yeah, apparently Trey just didn't want me to leave!  What a way to keep me here.  Plus, when something happens, it makes time go SO fast.  It's now almost 6 and I feel as though he woke up with his shriek just 5 minutes ago, but was 2 hours ago!  While everything seems back on track right now I'm afraid to leave the room!  Plus, even if I was going to leave now, it's rush hour and the traffic is going to be horrible!  Decisions... decisions... 

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