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 13, 2011

Day 42 of Feeding Tube

I figured I'd stop counting the days we've been out of the hospital now that it's been over 1 month.  Now I'll keep track of how long Trey will be on the feeding tube.  Today is day 42 of using the feeding tube.  Technically it was put in after he was extubated but they didn't start using it for feeds until October 3.  Before that they just used it for some medications now and then.  October 3 was when he was clear to start eating again, that was 7 days after the pneumatosis had disappeared from the x-rays.  Again, pneumatosis is a diagnosis from radiology that says that they see pockets of air in between the walls of the intestines.  Pockets of air usually means that there is some kind of trauma to the intestines and to be safe the doctors wait to feed till 7 days after the air pockets have disappeared from the x-rays.

Today was a good day for Trey again.  No episodes of throwing up - that's always a plus!  However he is still refusing his bottles.  Now that he can control his arms a little bit better he actually tries to push the bottle out of his mouth with his hands.  I did go out and get the faster nipple for the bottle but it didn't do anything.  He still just played with it or pushed it out.  I really think he's just getting lazy.  I don't know how to fix that though.  Hopefully the Gastro Dr will have some input on Friday about it.  

I began using the Tegaderm tape on his feeding tube rather than the paper tape again today.  I stopped using the Tegaderm to help his skin breath a little after his skin got irritated last week.  The paper tape didn't really hold very well though and I was afraid of him pulling the tube out in the middle of the night.  The Tegaderm holds a lot better.  It also looks prettier.

Trey with the paper tape last night right before going to sleep
Trey sleeps in his travel swing right next to my side of the bed in our room.  The swing allows him to sleep on an incline which is better for getting the continuous feeds and for his reflux.  I have a pad underneath of him to protect the swing from throw up and from pee.  He receives Lasix which makes him pee a lot, plus he sleeps through the night so his diaper gets really, really full and usually leaks out a bit.  I got tired of washing the swing every day and waiting for it to dry so I use the pads so that I can still use the swing through the day upstairs if needed.  We have a towel under the swing to protect the carpet.  His bassinet is still in the room and has now turned into a makeshift closet for him.  I just store his current clothes in it.  

From now on I am going to update just a few times a week since he's been doing better.  I'll still update with his progress but it's pretty much stabilized right now.  We do have a busy week this week though.  Wednesday is our appointment with the home nurse, Thursday is his cardiologist appointment and Friday is his appointment with the gastroenterolgist.  I'm definitely looking forward to finding out if his EF% has gotten any better.  My opinion is that we're due for a new sign!    

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