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....

Sunday, November 20, 2011

Day 49 of Feeding Tube - Update on Gastro. Dr.

The past few days have been a little exhausting.  After the appointment on Friday, David and I went out to dinner and then went shopping for Thanksgiving.  On Saturday I took Bryce to a birthday party at Shadowland Adventures where he played laser tag.  We then went to Toys R Us to make a list for Christmas.  Bryce was then very patient while I stood in the bottle aisle at Toys R Us for what seemed forever trying to figure out if Trey would take any of them.  There are SO many different kinds to choose from and you can't just buy 1, you have to commit to a package of 3.  I ended up buying the cheapest I could find, Evenflo, and then the additional pack of fast flow nipples.  We did some stuff around the house last night and I tried the new bottles with Trey.  It took awhile and a little coaxing but I was able to get Trey to take 3 1/2 ounces!  Trey and I both fell asleep early last night.  We were exhausted!

The doctor on Friday wasn't extremely helpful.  He can get off the feeding tube when he takes 120 mL at each feeding (for now, this number will increase as he gains weight).  He doesn't know how to get him to eat, we have to see a Speech Therapist that specializes in feeding to work with him and they don't know of any to refer me to except the ones at Children's Hospital and Inova.  He upped his Zantac from 1 mL twice a day to 1.5 mL twice a day.

Today he decided that he's not that interested in the bottle again.  However he did use the bottle twice today and took 2 ounces each time.  Again though, this was after a lot of coaxing to try and get him to take it.  It's very frustrating though.  He hasn't thrown up since we upped his Zantac though, which is great!  We shall see what happens.  So tomorrow I am going to try some magic to get him to take the bottle again.

Tomorrow morning the boys are going to go to the food store with me to finish shopping for Thanksgiving.  I still need to get the produce.  Tonight I started the prepping by dicing the dried apricots for the stuffing.  Tomorrow night I have to chop up the produce for the stuffing and make the cranberry sauce.  The fun begins!

David starting Trey's continuous nightly feed

It's 10 o'clock - medicine time!  He loves sleeping with those arms up above his head!

1 comment:

  1. Hoping no updates mean all is well :-)

    Emily is going for a Dobutamine Stress test on Tuesday, the last of her baseline tests now she's been transferred from Paeds to adult. Cross your fingers for us.

    Love Jackie x