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 - 2:15 pm - Some Smiles

I am SO tired today.  We woke up to thunderstorms this morning.  After getting the 2 boys dressed and fed, I drove the oldest down to the bus stop and the middle one to my in laws for the day.  Of course, since it was raining and no one around here knows how to drive anymore when it rains, it took about an hour and a half to get to the hospital.  Thank goodness the blue lot was open today.  The blue lot is the parking garage that is closest to the Inove Children's Hospital.  Yesterday it was full and I had to park in the grey garage, which felt like a mile away from Trey!  It was quite the hike.

Trey has been doing well today so far.  The PVC's have stopped and he has been more awake  Yesterday he had some physical therapy and today the occupational therapist stopped by to work with him.  I even got a few smiles from him this morning!

Trey giving the camera a tiny smile.  He was all smiles when I first walked in but the second I grabbed the camera they pretty much all disappeared!

Hannah is back working today but unfortunately, she is not our nurse.  We were pretty bummed about that but we've had Peggy today and she's been taking good care of Trey.  Actually... Hannah just stepped in to talk with us and she's so impressed with how great Trey looks.  He really does look amazing today - such a change overnight.  He's all bundled up and if he didn't have the oxygen in his nose and central line in his neck - he'd look like he was just chilling at home.  You'd never know that he just had major heart surgery and is in heart failure!

Last night, after leaving the hospital, I stopped off at Chevy's Mexican Restaurant for a Tenderhearts Moms Night Out.  Tenderhearts (click here) is a non-profit group that is part of Inova Health System Foundation and supports families that have children with congenital heart defects.  It was so nice to get out and also to meet other moms that have gone through heart surgeries and hospital stays.  The group also sponsored a "bagel break" in the PICU waiting room this morning and I got to meet another heart mom.  It's amazing how there is just a whole different group of women that I never in a million years ever dreamed I'd be congregating with.  I never realized that I would be discussing my childs ejection fraction with another mom... heck, I had never heard the term ejection fraction before this!  I'm really amazed at the support system these women have set up.

Oh yes, one test that I didn't mention yesterday was his BNP or Brain Natriuretic Peptide anazlysis.  BNP is an amino acid polypeptide secreted by the ventricle of the heart in response to excessive stretching of the heart muscle cells.  Basically, it measures heart failure.  The normal rates of BNP (granted, there is no standardized "normals" but a range of normals based on age and gender but for ease of understanding I'm going to use the entire range) are 4 to 100.  Over 100 indicates heart failure.  Trey's level yesterday was 1568 pg/ml (picograms per mililiter).  Granted, we already knew that Trey was in heart failure so it's not surprising that his levels are so high but this now gives him a baseline.  I assume that as his heart gets better they can determine his level of heart failure if this number goes down.

Today is day 2 of the day 7 waiting period for Trey's feeds.  So basically, today we are just chilaxing in his room.  He seems to be weaning off of his drugs better right now and seems so much more comfortable.

1 comment:

  1. What a sweetie. Smiling is an especially good diagnostic tool, IMO. Not to mention, an awfully good morale booster for a mom! I'm glad you took time to go to the MNO. Maybe one of these days, we'll make the trek down to one if those together. The support from other heart parents is amazing. Life is consuming me this week, but I'm keeping up with your blog and still praying.