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 26, 2011

Day 1 (home, take 2) - Good Day

Well, we had a good day today.  I stopped his feed 15 mL early because he started retching a little and I was afraid of him throwing up.  However he did still throw up a bit this morning after his feed but it was a little different than normal.  It happened 25 minutes after his feed ended, it's usually during or right after, and it was curdled again.  The good news though is that the cardiologists office got us an appointment with the pediatric gastroenterologist tomorrow!  I am thrilled!!  There is just no way I could have waited till November 18!

Otherwise, all feedings went smoothly today.  He wasn't too cranky from the wean and it was a pretty calm day.  We took 2 naps together which were much needed because I haven't been sleeping very well!

Tonight I started packing up for Bryce's Halloween Party at school on Friday and have put all the different activities in shoe boxes to organize them.  I've got 4 centers planned (2 crafts and 2 games), a game for the kids to play together and a snack.  Tomorrow I have to label the snacks with their Halloween names (owl eyes, ghost guts, chicken toenails, etc) so that the kids can make their Witches Brew Trail Mix.  I also made a batch of Chili to have for lunch this week.  I was really craving Chili this weekend so I bought the ingredients on Sunday with the hope of making it Sunday night... 3 days later it actually got made... not bad.  It's definitely harder to cook while also setting up feeds and doing medicine... thankfully David was home this evening to help!

Well, I think I'm going to hit the hay early tonight.  Now that his Valium and Methadone is just twice a day, his last medicine dose is at midnight instead of 1 am.  I'm going to attempt to go to bed right after I give that dose and hope I sleep.  Last night I couldn't get to sleep until a little after 3 am.

We also have a pediatrician's appointment tomorrow to follow up our ER visit.  Tomorrow is going to be a busy day of doctors.  Let's hope we have a successful appointment at the gastroenterologist tomorrow!

Update (1:48 am) - No, I didn't get to sleep as early as I had wished.  Too much "stuff" to get done.  I had to bring Trey upstairs, retape his tube, change his diaper, get ready for bed and put the chili in the refrigerator.  I did want to share something though... check out my re-taping job!  I did it while he was asleep and I rocked it!  He didn't wake up the entire time.  Score!  Replacing the tape is usually such a pain because he cries and cries.  I hate it. It had to be done tonight though... desperately.  I am so proud of myself!  Granted, the tube isn't quite straight this time... but I'll just have to give up trying to be perfect all the time... (smile)... although maybe I'll redo it tomorrow.

1 comment:

  1. Sounds like a better day! I'm anxious to hear what the GI doc had to say. I pray for you guys every day.