Lucas Camilo

We appreciate everyone sticking with us through yesterday’s long description of the “fontanelle tap saga”, and we can sense the frustration you all felt reading about the roller coaster ride that the doctors put us through.  This particular saga isn’t over yet: Lucas will get another head ultrasound today and based on those results – and the 100 time a day that everyone who walks in the room now touches his fontanelle – we’ll decide what to do, if anything, about the excess fluid in his brain before the end of the week.

We recognize that it’s also not always easy to follow our attempts at elaborating the details of Lucas’s medical situation.  We’ve learned a lot about biology, anatomy and medical science in the last 5 weeks, and sometimes we probably write as if all of our friends and family have been along for every stage of the ride (though in a sense you have been through this blog.)  One of the very complicated aspects of the NICU experience is getting to know all the doctors and nurses involved in Lucas’s care.  On the day of the debate over the fontanelle tap alone we were visited by the neonatologists (the team we see every morning during “rounds”), neurologists, neurosurgeons, and geneticists; within each group there are residents, fellows, attending doctors… and sometimes we’re even lucky enough to meet the big cheese from a certain department (though that’s not his/her official title.)  One of these days we’re going to write about all the fascinating and sometimes hilarious characters that we’ve met in the hospital along the way, but we’ll save that for when things calm down a bit more.

The other day one of the many doctors-in-training we see on a regular basis responded to our assertion that nothing should be done about Lucas’s fluid unless we are first consulted:  “Don’t worry,” he said,  “you’re one of the most important parts of Lucas’s team.”  Now, this particular doctor is not the best people-person, and his statement almost caused Krista to knock him off the garbage bin he was awkwardly seated on.  But there’s something about what he said that is true: as much as we believe that we are THE MOST important part of Lucas’s team, we have to rely on the expertise and knowledge of many other people in order to make decisions about his care.  And ultimately, whatever decisions we make, it’s the doctors that will have the responsibly to carry out procedures like the fontanelle tap.  It’s a tough position to be in.   But frankly, though many parents would like to believe that they alone shape their child’s early life, in fact you almost always have to rely on a bigger team, both inside and outside the NICU.  Our team includes all the many doctors who have been part of treating and attempting to diagnose Lucas, and it includes all of you who are reading his blog (listening to his story) and sending him positive energy, music, stuffed toys, poems, and more.

It also includes his nurses.  Without the nurses, whose job it is to both understand his medical challenges AND make sure he’s comfortable in all the little ways that matter, the roller coaster ride would be that much more harrowing.  Yesterday, after the dust had apparently settled from the fontanelle tap saga, an anesthesiologist showed up to get Lucas ready for surgery.  HUH?  Lucas’s nurse that day, who we really like and who has spent a lot of time with him over the last week, knew immediately that it was a mistake and made sure that everyone else knew it too.  Hours later she could still be heard grumbling under her breath about miscommunications between the doctors, as she gently rotated Lucas’s head and prepared him for his next feed.

We could go on forever about the many, warm, thoughtful nurses who have looked over Lucas during the past 5 weeks, and maybe we will at some point.  For now, we thank them all for making our ride easier, but even more for bringing extra comfort and care to Lucas during his challenging early journey.