It's going to be another long night . . .
Our night nurse couldn't make it tonight, so I am going to be pulling overnight duty, again. I can't complain, though, since Erin does this way more often than me. It's actually not so bad. At least that's what we keep telling ourselves. Medically speaking, we just have to give him some medicine in his feeding tube at midnight and hang his overnight feeds every two hours. Staying awake is the hard part. (Something some of our nurses can't seem to do). I'll be grouchy tomorrow, but I'm a tired, fat, almost forty first-time father so I'm crabby most of the time anyhow.
This might be a good time for a short recap for those unfamiliar with Zachary's history. He was born at 26 weeks gestation, weighing only 1 pound, 9 ounces. He was what's known as a micro-preemie, the smallest of the smallest. The odds of survival at his size and weight weren't great, especially since his lungs were all but destroyed by the ventilator that kept him alive for so long. We were told on multiple occasions that he wasn't going to make it or that we would have to turn off life support. He did and we didn't.
He was hospitalized for eight months. He has a tracheostomy (a hole in his neck through which a tube has been placed) to help him breathe. He is connected to a ventilator about 2/3 of the day to provide pressure support to keep his lungs from collapsing and ease his breathing. (He just gets pure oxygen otherwise). He also has a feeding tube that was surgically placed in his stomach so we can give him the required amount of breast milk he needs if he can't take it all by mouth. He also had his intestines disconnected for a while because his plumbing wasn't working and the resultng backups were making him sick. Fortunately, the pipes have been put back together and everything is flowing freely.
He came home on June 20th. Our lives haven't been the same since. He has rigid routine of medicines, therapies, treatments, feedings, doctor's appointments and other assorted must-do's and need-to-do's that keep us on our toes. We are fortunate to have home nursing for 16 hours each day, when they show up. (There'll be more posts on the nursing later). His nursery is really a small hospital room. He is attached to many machines that monitor his vital signs and beep, buzz, and bleet when there's a problem -- and more often when there's not. We've been to a bunch of doctor's appointments, and taken a couple walks around the neighborhood in the stroller. That's about the extent of our venturings, though, since Zachary travels with no fewer than two adults -- usually three -- because he has so much equipment that needs to be carted around in case of emergency.
What's the tag line from that show John and Kate Plus 8: "It's a crazy life but it's our life?" That's us for sure.
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