Lucas Camilo

Last Friday we had another “family meeting”. We sat down with the neonatologist, a social worker, and Lucas’s case manager to talk about a plan for discharge. During the meeting we found out some new, challenging information about our insurance plan that may limit our options for home nursing.  Needless to say, we’ve got a lot of investigation and discussion to do over the next week, which is never fun when you’re talking about dealing with the private insurance industry.  We’re not going to get into details right now, but the setback was frustrating precisely because Lucas is doing so well and on the path to go home.

Though he’s continued to have a few throw-up episodes, Lucas is doing great taking milk and is now back to full feeds – about 500 milliliters of breast milk a day!  (At that rate, what’s a few little spit ups of 5 or 10 ml?)  This is good news because one of the main criteria for getting to leave the hospital is being able to tolerate full feeds.  The night-nurse who’s had Lucas lately has been funny whenever we call to see how he’s doing at 11:30 pm, saying triumphantly “he hasn’t puked yet!”  We know that feeding can be a huge challenge and that he’s probably not in the clear yet, but he’s made so much progress since the urinary tract infection started the vomiting trend a few weeks back.

He’s also doing great on his breathing.  Starting on Saturday morning he went to the CPAP mode of the vent, meaning he’s no longer getting assisted breaths, just some extra pressure.  Already his vent settings were about as low as they could go, so if he keeps doing well on the CPAP they may actually test him off the vent at some point, placing what they call a “trach collar” so that he still gets humidified air into his lungs.  There’s a chance, then, that we wouldn’t need a home-ventilator for that long, but rather could move to and smaller and less complicated humidifier.  Again, we’re not getting our hopes up too high but it does feel good to see him breathing so well.

Finally, the good folks from physical and occupational therapy have been spending time with Lucas lately and are impressed with his progress.  They brought some new thumb splints for him to wear but then decided he didn’t need them since he was moving his hands so well.  We continue to do stretching and range-of-motion exercises with him everyday, and there’s no doubt that he’s getting stronger.  We’re even starting to see him roll big head around, if only slightly.

The best demonstration, though, was this morning with a wonderful woman from occupational therapy.  She had him practicing his suck and swallow, and after a slow start, he really got into it, especially when we introduced a little sugar water.  Though he’s still pooling a lot of secretions in the back of his throat, once they get suctioned out he can actually suck on a finger, swallow small amounts AND coordinate breathing.  We were both almost moved to tears by the whole exercise and the positive energy of the occupational therapist; this sucking coordination is a big step toward being able to breastfeed.

So as we investigate and grapple with our health care options for Lucas, we look  forward to another week of steady progress… now if only those pesky stuffed animals would stop bugging him all the time!

(Here’s a picture that our friends in El Salvador will really appreciate.  Thanks to Heyward, Alexis and Sandra for finding Lucas the smallest Frente shirt around! Gracias a Sandra,  Alexis, y Heyward por la camiseta roja! Lucas dice, “presente en la lucha!”)