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, November 9, 2011

Day 14 Post MGH / 27 Post Inova - Irritation from the Feeding Tube

The other day when Trey's feeding tube got pulled out a bit from under the tape it left a red mark on his cheek.  When I changed the tape afterwards it must have irritated the skin a bit and it now looks raw where the tube was.  After I re-taped it I moved the tube upwards so it wouldn't be sitting on that spot again.  It looks like it is sore and I am dreading having to take the tape off to put new tape on in a few days.  It looks like it hurts.  I don't want to move the tube to the other side because I just change nostrils and you're supposed to alternate the sides of the nostrils.  So, in the hospital the tube was in the right nostril, right before we left the hospital we moved it to the left nostril and the other day when I did the monthly change I switched back to the right nostril.

We bought a baby scale from Amazon so that we weigh Trey to see how he's doing between nurse visits.  I also thought it would be a good way to guesstimate how much he takes in while nursing, plus I thought it would be good to have when we start the wean from the feeding tube (no idea when that will be yet) to make sure he's not losing weight fast.  Today I nursed him at 11 am and 5 15 pm.  I forgot to weigh him at 11 but according to the scale he took in about 3 ounces after the evening feeding, which is pretty good!  Unfortunately, he threw up again at the 7:30 feeding.  Now I'm wondering if it really is the soy that is helping him keep stuff down.  I thought maybe it was just a coincidence that he stopped throwing up when we started the soy formula.  I thought that since it also seemed to coincide with the stopping of the narcotics that maybe it was the narcotics that were making him nauseous.  It could be that he actually is sensitive to milk products and since I didn't cut dairy out of my diet that might have affected him.  I wish I could find out definitively though because I'd stop pumping and just go directly to formula if it ended up he couldn't nurse!  While I love my son and I enjoy nursing... I also really like my dairy products and after the few months that we've had... I need my cheese and ice cream!  I guess I'll talk with the Gastro. dr about that next week.  Until then I'll just keep that in mind and see what he does.

The home nurse didn't end up coming to the house today.  She wrote down the wrong day in her calendar and had been planning on coming here tomorrow.  Not a big deal for us because we don't have that much going on and he has been doing ok during the last few days.  He spends most of his time eating, cooing, smiling, sleeping or eating his hands now.  He loves to chew on his hands and he tries to jam both of them in there at the same time although he doesn't have much luck with that for long! 

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