A Day In the Life with CHD

All in all Trace had 14 surgeries and had a rigorous daily routine. It is beyond remarkable what Trace endured and his strength and will power is truly amazing. Trace’s day started at 5:15am and did not end until 10:30pm at night:

  • 5:15am 2 medications
  • 6:30am Feed – Trace never learned how to eat and was 100% tube fed
  • 9:30am 3 medications and a feed
  • 12:30pm 1 medication and a feed
  • 1:00pm Nap
  • 3:30pm Feed and make his food for the next day
  • 5:00pm Medication
  • 6:30pm Feed
  • By 8:00pm Bath and bed
  • 10:00pm Feed while asleep plus 3 medications.
  • 10:30pm clean out feed pump and then parents go to bed.