Lucas Camilo

Before they left DC earlier this week, we asked Burke’s parents (Michael and Mary Jo, known by their grandkids as Papa and Nonna) to write a “guest blog”, which they graciously did.  It’s a bit long, however, so we’ve decided to post it in two parts.

Lucas had a quiet day yesterday as doctors continue to monitor his hydrocephalus (excess fluid in the brain).  He got another head ultrasound last night, but its unlikely that anything dramatic will happen before the weekend.  His doctors say he’ll be ready for another attempt at extubation by Monday or Tuesday, so next week promises to be a big one.  For now, Lucas continues to enjoy lots of music, with recent favorites including Johnny Cash’s Children’s album and the Nields (when he feels like rocking),  or Latin Lullabies and “Renne and Jeremy” (when he feels like snoozing).

Reflections on a Visit to the NICU

If anyone had told us that we would be “guest bloggers” before August 17, we would have laughed.  But, here we are.

We have just returned from a three day visit to Washington, D.C. during which we spent most of our time in Room 638 of the NICU.  Three days is long enough to be more than a casual visitor but not so long as to become a real part of the NICU routine.  We had the perspective both of inside participants and outside observers at the same time.  Each of us wrote a separate set of observations and what you find here is a synthesis arrived at with minimal (but some) squabbling. So, here are some reflections on this experience.

One reason for our visit was so that Mary Jo could spend part of her 63rd birthday holding Lucas, celebrating his birth and life.  This she was able to do, for an hour on her birthday and then for a bonus two hours the next day.  We had met Lucas when he was four days old.  That first week was very rough on parents and grandparents as he struggled merely to survive.  Seeing him stronger and having him comfortable in Mary Jo’s arms was a welcome antidote to the earlier anxious time.

At the end of that first visit, Lucas had just been transferred to Children’s Medical Center and was setting into his new quarters, a fairly large private room, with a striking view of green fields and trees; a slight difference in his room’s orientation and his view would have been parking lots, buildings and streets.  Inside the room, a monitor extends on a long arm from the wall and the ventilator stands next to his crib; they look like large mechanical storks or cranes hovering protectively over Lucas.  And in a sense they are.  Wires and tubes connect him to the machines, which provide the breathing assistance and record and display all manner of information on blinking monitors (just like on TV medical dramas).  Very nice digs indeed.  And in the middle of all of this, Lucas sleeps peacefully unaware.

It is hard to be around Lucas in the NICU and not to have a sense of irony.  Modern medicine is on display, helping Lucas to live until he is self-sufficient and his mysterious injury heals.  And you see the progress that the machinery has allowed.  He takes mother’s milk (yet through a tube) as his only food; he is able to maintain his body temperature without the incubator heat (graduating to a crib while we were there); from his low point, he has gained more than two pounds; he breathes more often on his own “over” the ventilator; he is awake a bit more now and is more active (but progress in strength and activity is slow).  With all of this, however, and with all of the attending physicians and specialists, there is still no diagnosis of Lucas’ condition or real understanding of its cause.  Many things have been ruled out, which is good, but those remaining possibilities do not seem to fit the observable symptoms, leaving us all a bit at sea.

We felt a certain grateful appreciation that Lucas is being given the time and opportunity to heal himself, but a sense of fatalistic frustration that there is no name that really fits his condition, no real certainty and no magic treatment that will make him better.  And so Lucas himself becomes the most important monitor of his own condition and welfare.  We feel the irony of brilliant medical science and shiny machines coupled with shoulder shrugs when the most important questions are asked.  Another instance of modern life, where increasing knowledge and awareness does not necessarily translate into a capacity for action, change or correction.  And so we all wait.

(part 2 will be posted tomorrow)