Lucas Camilo

We’re still learning to take care of Lucas at home, and although our learning curve seems to have a healthy arc to it, we continue to discover new challenges. We’ve had a couple scares recently when we’ve been suctioning Lucas’s trach, with his secretions looking different than they did in the hospital. So yesterday we spent much of the day getting different opinions about suctioning. We called the clinical director for the home nursing agency as well as the pulmonology department at Children’s, we emailed a couple of Lucas’s NICU nurses, and went online to tracheostomy forums for advice. We seem to be narrowing in on possible causes of the problem ( design of the suction catheters, calibration of the suction machine, and level of humidity from the vent and collar), but we’re still watching closely.

When we were discharged from the hospital we were told to monitor changes in Lucas’s secretions and that if there were significant we should bring him back to the hospital. The idea of doing that sounds about as fun as listening to Burke play the accordion for three hours straight, so we’re thankful for all the home advice we’ve gotten. It’s been especially helpful to get very detailed responses from total strangers online sharing their experiences with home trach care.

Speaking of strangers with helpful stories, we’ve been reading a book of essays by parents of special needs kids. It’s called The Elephant in the Playroom. The essays share the incredible difficulty and joy of being part of a family with a special needs kid (or kids, in some families’ cases.) Although none of the kids discussed in the book share Lucas’s exact challenges (all have been diagnosed with some specific disability or disorder, and are a lot older than 3 months) it’s still very helpful reading.  And inspiring. We definitely recommend the book.

The biggest news around the Lucas Camilo S. H. household today, though, is that we’ve set a new record for time together without a nurse around. Yesterday evening the nurse who was scheduled to come overnight had a family emergency, so we decided to go through the night on our own. Around midnight we hooked up Lucas’s milk pump, gave him his meds, turned up the volume on his alarm, and went to sleep on the futon next to his crib. Lucas did fine, sleeping through most of the night, and although Burke got up a couple times to change his diaper and give him more food, it wasn’t until 6:00 this morning that his alarms went off and he called us both out of bed to suction out his trach.

The payoff was big. Going through the night without a nurse meant that we could have a quiet morning with just the three of us. We all went back to bed around 6:30, but not too long afterward we were awake again. This time we took Lucas off his vent, stuck the “nose” over his trach, and brought him to bed to cuddle. It was a moment we’d been dreaming of since before he was born.