Lucas Camilo

Thanks everyone for your thoughtful responses to our last post.  It’s reassuring to know that we can write about what’s on our minds – even when it’s not rainbows and holidays and Lucas’s awesome progress – and that you’ll stick with us.  Thanks.

But of course there is progress to report, too.  This week we had two visits to specialists who, once again, confirmed that Lucas is doing great. On Wednesday we went in for a follow up visit with our pulmonary doctor who listened to Lucas’s breathing and said he sounded good, even with his small cold.  We spent a while talking with him about questions related to pressure settings for the vent and time off the vent and on the valve.  Dr. Koumbourlis is always warm and helpful and open to talking pulmonology for as long as we want, but ultimately he kept answering our questions by telling us to keep doing what we’re doing: experimenting with time off the vent while avoiding pushing Lucas to exhaustion; and maintaining the settings on the vent which are minimal and not necessary to change if he doesn’t need it.

We also met with our favorite respiratory tech who was full of geeky vent and trach tricks.  He talked to us about the alarm level settings on the vent, the positioning of the trach in Lucas’s neck, and a new technique for giving Lucas extra breaths when his oxygen saturation level dips down into the low 90s.  He has decades of experience working with kids and adults with respiratory issues, so when he got gushy about how well Lucas is doing (and the two of us, too), it felt like a serious compliment.

Two days later we were back at Children’s for a slightly more traumatic visit to the Ear Nose and Throat doctor, who was checking Lucas’s trach and the tubes in his ears.  It turns out Lucas’s ears collect a lot of wax (so embarrassing!), and thus the doctors tried to clean his ears so they could see the tubes.  It also turns out Lucas HATES having his ears cleaned.  The ENT doc and his assistant then wanted to look down the stoma (hole) in his neck with a tiny camera.  They somehow didn’t have the tiny camera which fits down his trach tube available, so they had to pull the trach tube out and stick a larger camera directly into Lucas’s neck, which was pretty traumatic.  Lucas hated that too.

The final report was that things looked good and to keep doing what we’re doing.  We should have called it a day at that, but instead we proceeded up to the lab for a blood draw.  Lucas has notoriously difficult veins to find, which meant lots more poking with even sharper objects than the ENTs used.  Burke snagged a “Mr. Grumpy” sticker for Lucas to try to distract him, but Lucas just threw it on the ground (grumpy indeed!)  By the time we got home Lucas was exhausted.  Even after his long nap he was not the happiest camper in the afternoon.

The other fun news this week is that Lucas’s vocabulary is growing, especially his ability to identify body parts.   He almost always nails the response for “where’s your nose?”, sometimes even preemptively answering it by pointing to his nose.  And for a kid with severe muscle weakness, he has really amazing aim.  He’s also getting pretty good at identifying ears, mouth, belly, and even wiggling his toes on command.  And when he’s not pointing at parts of his body, Lucas is using his hands more actively to make the sign for yes/more, to play his new xylophone, and to feel the textures in his books.  (See the picture of the snowman’s fuzzy mittens above.)

And the final news for today is that although Lucas has had a bit of a cold all week, it hasn’t slowed him down much.  He’s had a small cough and has needed a lot more trach suctioning than usual.  But he’s a trooper and we’re hoping he’s turning the corner on the cold this weekend.

And finally, we never got around to mentioned to the visit of our friends Daniella, Gabe, and Rafi on New Years day.  It was great to see them, and especially great to see Rafi – he’s older, bigger, faster and more determined than when we met him this summer (pics of that visit here).   Rafi brought his helmet with him, which happened to be made of the same jungle-animal green material as Lucas’s trunk brace.  So we tried to get the two of them to pose together, but the closest shot we got was the one below, which represents the meeting well: Rafi on the move, and Lucas shocked at a baby who moves so darn fast!  We’re pretty sure Rafi was too young to take Lucas’s reaction personally and that they’ll be good friends down the road.