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....

Tuesday, October 11, 2011

Day 29 - 11:30 pm - Getting ready to leave

Yes, they are making us leave.  Trey is expected to be discharged tomorrow, October 12, exactly 1 month from his admitting date.  It's been quite a journey so far.  I begged to wait 2 more days so that I can get things in order so that I can feel comfortable with bringing him home but it didn't work.  There's still a lot of stuff to do at home but they've eased up the feeding schedule so that's not as scary.  The new plan is to let him take whatever he can from the bottle every 3 hours (with 1 nursing session a day for now) and tally up the amount of mL he is eating.  Whatever he doesn't get during the day becomes a continuous feed through his feeding tube using a pump overnight. 

He got his feeding tube taken out today to give him a break.  He didn't need it during the day and I had to learn how to put one in before we went home so it was out for a short while.  It's the first time in 30 days that I've seen him without something on his face!  It was so nice to see!

Today I had one last visit with Dr. Shen and Chelly, the cardiac surgeon and physicians assistant that did Trey's surgery.  Hannah also came to visit and she said she'd stop by tomorrow before we left to say her goodbye to Trey.  Dr. Shen will be in another surgery all day tomorrow.

Chelly & Dr. Shen - Thank you for fixing Trey!

Tomorrow I am going to get the schedule for finishing Trey's morphine and valium wean.  He's still on the medicine and I will have to complete the wean at home.  He'll also come home on Digoxin, Enalapril and Lasix.  These medications are for his heart.  Of course, I have a spreadsheet all ready to go to keep track of times he has to take medications and has to eat.  It also includes the amounts of medicine he needs for that day and a place to keep track of the mL he has eaten. 

I also had to learn how to insert the feeding tube in case it gets pulled out.  It also has to be replaced every 2 weeks.  I learned how to measure the length it needs to be to make it to his stomach.  The end of the tube goes at the tip of his nose, you pull it across to his ear and then from his ear to below his rib cage.  You then mark the tube at this measurement so that you know when it is most likely in the stomach.  Then you put some vaseline on the tip and feed it up his nose.  This was not fun.  He hated it and I felt horrible.  The poor kid cried... heck, I'd cry if someone was shoving something up my nose and down my throat!  Once it's in, you check to see if it's in the right place with the stethoscope.  You insert 4 mL or air in the tube and listen for a whoosh sound.  Then you tape the tube to his face and that's it!  The fist try I accidentally fed the tube up his nose and out his mouth.  Oops.  I felt absolutely awful that I had to do it to him again.  Thankfully everything went alright on my second try.  


Well, I am going to get to sleep.  Tomorrow is a busy day!  Lots to learn - medication, feeding pump, etc.  Before I go though... a few weeks ago I went to a Tenderheart moms night out.  This is a group of families that have children that all have congenital heart defects.  The group is run through Inova Hospital.  At the MNO I met a really nice gal named Jen.  Her son was to have surgery on October 6.  Unfortunately, he had a cold and the schedule had to be rescheduled for October 20.  Well, today I got a call from her telling me that they were called in for a last minute opening in the surgery schedule.  Little Zachary had his pre-op today and his surgery will be in the morning.  Please keep Zachary and his family in your prayers tomorrow.  The surgery is to start at about 7:30 and last roughly 5 hours.  Also, please pray that our transition home goes smoothly tomorrow.  Thank you!!

1 comment:

  1. Hurray! Welcome home to Trey! Good job mama - I've never put a feeding tube in before. It looks challenging.
    I sent you a card that should be arriving tomorrow or the next day. Keep an eye out for it.