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, October 19, 2011

Day 7 (home) - 1 week Post Discharge!

Wow, so we've been home for a week.  It's been a  l o n g  week!  Today was good though.  Trey was an absolute doll and only cried twice because he was hungry.  The difference in his something is wrong cry and his I'm hungry cry is noticeably different - at least to me!  It was great to hear the hungry cry because he hasn't really acted hungry since September 12.  This was the first time I've heard him cry for food - which is great!  So maybe the Reglan is helping his stomach empty more so that he feels hungrier.  I sure hope so.  He did spit up a bit today but not bad.  Not like the other times. Trey actually took a 90 mL (3 oz) bottle today!  That's the most since September!

We had a really chill day.  I actually got laundry done and my mother in law brought Cole over for lunch.  I wrote some cards out and organized some addresses.  I was able to pump, feed Trey (bottle and tube), get all his meds in, watch a movie (The Other Guys... it was so so) and do some random stuff done - all without feeling crazed!  Oh... and I ate!  I also went to Math Night with Bryce (the oldest) at his school and we had a date at Yogiberry Frozen Yogurt afterwards.  It was fun and we had a good time. 

The home nurse came today and he weighed the same as yesterday.  He should have gained a bit since then but she thought that since he maintained his weight somewhat while still throwing up and having some reduced calories the past few days was pretty good so she's not that concerned at the moment. 

Tomorrow we have an appointment with Dr. Callahan, the cardiologist, in Fairfax.  This will be our first out patient visit with him so I have no idea what will happen.

Well, I am off to sleep.  I stayed up way too late last night (3 am) putting together Bryce's Halloween Party at school.  I'm the room mom this year (was last year too) and I'm not going to quit.  Bryce was really excited for me to do the parties again this year and I don't want to let him down.  I'm using a lot of what I did last year so it won't be too hard.  I have 4 centers, 1 game and a snack planned.  I figure I can get 1 activity a night planned out and into my travel box.  I made the invitations last night and sent them through backpack express today.

Snazzy, eh?  I got the template from http://www.designhousedigital.com/

10/19 Feed

Time to give the Valium!

1 comment:

  1. Are you kidding me? You're room mom on top of all of this?! Woman - you astound me. I am officially a lazy and unmotivated person compared to you.

    I'm so glad Trey is feeling better today. May tomorrow show even more improvement!