Disclaimer

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....

Thursday, November 3, 2011

Day 9 post MGH / 22 post Inova - No Puking!

Trey didn't have one episode of throwing up today at all!  I was so thrilled when I woke up this morning to him smiling at me instead of him retching.

Trey and I went to Cafe Rio for lunch today before his appointment at the pediatrician.  I actually packed his feeding pump in the backpack they sent us and we became mobile!  It was Tamale Thursday at Cafe Rio and it was oh so good.  Trey napped while I (and he!) ate lunch and it was very nice to be out.

Yummy - tamales and Milk!

Then we had an appointment with Dr. Lee at our pediatrician's office.  She was very happy with how he looked and sounded.  His lungs sounded much better and he is gaining some weight.  Next week I have to call to see if the RSV vaccination has been delivered yet and then we will set up an appointment to get his 2nd dose.

15 lbs 8 oz!
Tonight we took his feeding tube out to change it and let him go tubeless for his bath.  After the bath I remeasured for a new tube and put it in.  Poor kid - it was not pleasant and he was very upset about it.  I checked the tube but I had a hard time hearing if it was placed correctly or not because he wouldn't stop crying but eventually I could hear it.  Afterwards he went right to sleep though because he was so exhausted.  After he fell asleep I retaped it because the first time I didn't do such a great job.  So that hurdle is now over.  I was afraid of changing it because it's so not pleasant.  You just have to remove yourself from the situation and just do it.

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