Lucas Camilo

Tomorrow Lucas will have surgery for the first time.  He’s lucky in a way – a lot of preemies have multiple surgeries along the way to help correct different issues they are facing.  Lucas will get a double surgery but neither is corrective: rather, the procedures will allow him to continue breathing and feeding with assistance (for now), but from a better place.  That place, if we didn’t mention it before, is home.

The first surgery is one we’ve already mentioned, the tracheostomy.  Lucas has tried three times now and been unable to go off the ventilator, despite having the lowest possible settings (including receiving room air as opposed to increased oxygen) and doing fine on the CPAP mode of the vent.  We finally got a good explanation from the ENT last week about why this is the case, and (not surprisingly) it involves his low muscle tone.  It seems that the tube itself is serving as a structural aid in keeping his upper airway open, and that the muscles in his throat still aren’t strong enough to fully hold open the airway once the tube is removed.  Therefore, the airway collapses inward and he’s got to work a lot harder to take deep breaths; consequently his CO2 level goes way up, and he gets exhausted after a while of breathing without the tube.

Lucas and dad on a conference call discussing the perils of "free" trade

A tracheostomy would create a hole in his neck that he can breath through – temporarily eliminating the need to take breaths through the upper airway – and where a tube can be inserted to keep him ventilated.  It’s a fairly simple procedure, heals quickly, and the biggest upshot is that he’ll be permanently free of the ET tube currently taped to his face.  And losing the ET tube means Lucas will be able to do things like make facial expressions, touch his face, and suck more easily.  And most importantly, with secure access to his airway we’ll be able to pick him up and hold him more often.

He’ll go under general anesthesia for the surgery, and it should only last about a half an hour.  Later on we’ll learn all we need to know about how to take care of the trach, and we’ve already started talking to some parents who’s kids have trachs to think through the benefits and challenges.  One thing we’ve learned is that at any time once he’s able to breath on his own the tube can be popped out and the hole will heal up, leaving only a little scar.

As long as he’s going to be in surgery and under anesthesia the doctors have also recommended a second procedure: the placement of a gastrostomy tube, or g-tube.  Though the removal of the ET tube from his throat will open up the possibility for Lucas to feed orally, he’s still not ready.  The strength and reflexes he needs to suck and swallow aren’t well enough developed – again due to his low muscle tone – and so it’s unlikely he’ll be able to accomplish oral feeding soon.  The g-tube, inserted directly into his stomach through a hole made by the surgeon, will allow us to feed him breast milk regularly while he also practices oral feeding and gets ready to breastfeed eventually.  Lucas has continued to struggle with his feeds over the past few days since he got an infection last week, so the break from feeding, which is necessary to properly insert the g-tube, might actually be beneficial in terms of giving his tummy a rest.

So there’s the game plan for tomorrow.  We’re not too nervous since they are simple procedures with little chance of complication or infection, so in some ways the decision itself was biggest step (for us at least, probably not for Lucas).  Of course we don’t want to get our hopes up too much that Lucas will get to come home with us in the next few weeks just because of these surgeries.  There are still a number of hurdles ahead, not to mention training for us to be able to do upkeep on the trach and g-tube and handle any problems that may arise.  Whenever it happens, it’s going to be a complicated homecoming, but we’re confident that the decision to get surgery is the best for Lucas in terms of helping him recover and ultimately arriving to a less infectious environment as soon as possible.