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....

Friday, October 14, 2011

Day 2 (home) - Feeding Tube had to replaced already!

So - Trey had a rough day today feeding wise.  He didn't do very well at all.  After the night feeding ended today I got all his medications in order and made sure he got everything at the right time.  Silly mommy forgot that he needed a diaper change though.  I was too busy focusing on the feeding and medications.  Duh.  Poor kid was poopy!  Unfortunately, he messed his outfit and swing so I had to deal with that as well.  In all the mess though he somehow got his feeding tube undone.  At first it was just a bit out.  I went to go wash my hands to reinsert it but when I came back he had pulled it all the way out.  Whoopie.

Look... no tube!  See the poor rash on the side of his face?  That's from the tape.

I untaped the tube and left him tubeless for awhile.  At 11 I nursed him and he did a decent job.  I guesstimated about 60 mL at that feeding.  Remember, the goal is 120 at each feeding.  After that feeding I gave him a bath and then decided to put the tube back in.  Grandma was over today helping me straighten up the house but I decided to put it in myself so that it didn't upset her.  It's not really a fun thing to watch.  I had to call the hospital because I couldn't remember what end to measure the tube from - the top tip or the bottom tip.  In the instructions it just says, "the tip."  Suzy, from Inova, told me it is the bottom tip so I measured from his nose to his ear, then ear to stomach. That gave me a measurement of 29 centimeters. I marked the tube, swaddled Trey and put the tube in.  He was not happy.  I was petrified that I would get it in his lungs instead of his stomach.  It was pretty easy to maneuver in and once I got it down some secretions started coming out the other end (duh, forgot to cap it, gross!) so this told me I was in the right spot.  Just in case though, I used the air test and I heard the whoosh in his stomach.  I taped it up pretty good - better than what we did in the hospital I think - but unfortunately his skin is getting irritated by the tape so it is pretty red.  I was thinking of switching nostrils but it's only been in the left one for 3 days and before that it was in the right for 2 weeks, so I stuck with the left.  I have to say, I was pretty dang proud of myself for getting it on the first try!

I do good work ;-)
This is right after he stopped crying

To give him a break I did the next feed totally by tube.  He was pretty tuckered out from inserting the feeding tube so I let him rest.  At 4:30 he took 40 mL by mouth and I put 85 in the pump but he started spitting up after 65 mL got down so I stopped the pump to let him rest.  At 7:30 he took 10 mL by mouth (boo!) and I only did 100 by tube since I was going to try to get another feeding in only 2 hours later at 9:30.  I got a little behind in my feeds this morning so I am playing catch up so that I can get some mL's in before the night feed.  At 9:30 I'm putting in another 100 mL to make the total taken today to be 495 mL.  Then the overnight feeding total will be 495 mL (15.7 oz) at a rate of 58 mL (2 oz) an hour.  Confused yet?

Last night I organized all of his paperwork into a binder since he had an appointment at the pediatrician today.  I wanted to have everything in the right spot.  I organized it all into tabs.  At the beginning I have his feeding/medicine schedule and then tabs, which are as follows:
1)  Discharge Information
2)  Feeding Plan & NG Tube Care
3)  Wean Schedule
4)  Feeding Pump Information
5)  Continuum Home Nursing Information
6)  Medicine Information
7)  Weight & Ejection Fraction Charts
8)  ALCAPA Info & Misc. Notes

It was really convenient this morning because I didn't have to go shuffling through all the papers I have to find the directions on how to put the NG Tube in.  I wanted to make sure I remembered everything correctly.

His visit at the Pediatrician went ok.  The nurse wasn't quite sure why we were there though.  At first she thought we were there for a follow on his surgical site, except his surgery was a month ago today so it's pretty healed.  Right now we need help with weighing and feeding.

Well, its almost 10 o'clock now and time to get Trey's medicines all ready to give him.  At 10 he gets Digoxin, Enalapril, Lasix and Methadone.  Basically my day consists of feeds and medicine.  Doesn't sound like a lot - but it's a busy day!

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