From birth to his first discharge, Daniel spent 51 days in the hospital. We then spent 7 weeks at home before returning to the hospital for Daniel's 2nd open heart surgery. Daniel spent 58 days in the hospital for his second open heart surgery.
I remember feeling like HOME was the answer to all our problems, and in many ways it was. But we have been home 7 months now, and it hasn't been easy. When we came home, Daniel was on 21 different meds 12 times per day. He was on 3 sedation meds (clonidine, methadone, Ativan) that I was then in charge of weaning. If he didn't get his meds every 4 hours, he would withdraw. It was absolutely terrifying. He was also on g-tube feeds 20 out of 24 hours per day, plus oxygen for the first couple of months. We were confined to one small area of the house where all his tubes reached. Going anywhere for appointments required lugging meds, feeds, feeding pump and backpack, and oxygen around. Even if I had had 24/7 help, few people feel comfortable dealing with all of that medical equipment. I'm only just now starting to breathe and realize how crazy it all was.
Seven months later and Daniel is not only oxygen anymore. He's "only" on 8 meds 6 times per day, and he's hooked up to his feeding pump 10 out of 24 hours. Things are much more manageable, but there was a pretty huge learning curve. What was the most challenging thing to you about life at home? If you had any advice for parents newly at home with their heart warrior, what would you say?