Lucas Camilo

Lucas took a big trip out of the house on Monday, returning to Children’s Medical Center for consecutive appointments with three different specialists.

Lucas shows off his new Bivona trach

We started with the ENT (Ear, Nose, and Throat doctor) who did the surgery to place Lucas’s trach nearly three months ago.  We’ve had lots of questions about home trach care – about suctioning, humidity, secretions, irritation of the trachea, and developmental concerns related to the trach limiting Lucas’s head movement.  The latter issue has been particularly frustrating since the “trach guru” in the hospital effectively blocked us from trying a different trach (despite the fact that physical and occupational therapists had recommended it).   But yesterday, the ENT trumped the trach lady after hearing our arguments and after he put a scope down Lucas’s trach and saw that the tissue was completelyhealthy.  At the end of the visit the doctor removed Lucas’s old Shiley trach and put in a Bivona Flextend.

In the medical equipment world people like to use car metaphors.  More than once we’ve been told that a Mercedes version of some piece of equipment exists, but that this Toyota (ventilator, air compressor, etc.) will do Lucas just fine.  We like to believe that the “people’s medical equipment” is as good as the fancy stuff, but in the case of the trach, the Mercedes turns out to be even more decked out than we had imagined.  The Bivona trach has an extra tube that sticks out further from Lucas’s neck and hangs lower, so if he wants to move his head from side to side while he’s lying on his back his chin won’t get caught.  And it’s made of a much more flexible plastic material than the hard, rigid plastic on the old Shiley.  Before, moving Lucas often caused the vent tubing to pull on his trach, which in turn pulled his neck.  Now, the flexible trach absorbs a lot of the movement so his stoma is spared the stress and possible injury.  The doctors say that suctioning may be more difficult now, but we’re still happy to have the elite trach.  It seems like a real triumph, in fact; funny the things we get excited about these days…

Our second stop was with the gastroenterologist and the purpose of the visit was twofold: first, to check his weight gain, and second, to learn how to change his feeding button.  On the first front, the doctor was happy to see that Lucas had gained another pound, and while looking at his chart and chatting with us, she agreed that we could stop adding formula to supplement the calories in his breast milk.  Then she went over to examine Lucas – who had stripped down to his diaper – and immediately changed her mind: “he’s still too skinny to take away any calories!” she said.  So we’re keeping the supplemental calories AND increasing the quantity of breast milk, and hoping for even more chub.

At the end of the day Lucas had spent nearly 6 hours out of the house.   He was awake most of the time, and he probably had some flashbacks from his time in the NICU as he underwent the usual doctor poking and prodding, including a rather uncomfortable experience getting a urine sample.  He also wasn’t a big fan of the cold, winter air on his face during transport.  So when we finally made it home Lucas curled up and took a long nap… and we pulled out a six-pack, ordered pizza, and celebrated a successful day.