Lucas Camilo

It’s been two days now and Lucas is still breathing with no extra help!  It’s hard to put into words how excited and proud we are to see him doing so well breathing.  All the staff in the hospital have been very congratulatory, and some of the nurses that know Lucas best have literally cheered for the little guy when they come to visit and seen him off the vent and on the trach collar.

We’re not sure that he’s ready to be off the vent for good quite yet.  For the past week Lucas has been slowly losing weight, and he’s lost almost half a pound.   The doctors aren’t sure why this is happening since he’s vomiting much less than a week ago.  He still has the occasional spit up, but not enough to explain weight loss.  Yesterday they decided to fortify the breast milk with even more calories, and in case he’s just hungry they’re going to increase his feeds beyond the typical caloric amount for a baby his size.

So it’s also possible that breathing without the support of the CPAP vent is requiring too much exertion.  It’s not uncommon for kids weaning off vents to stay on them at night and just use the collar during the day, so if Lucas doesn’t go back to gaining weight soon the doctors may try that vent/collar combination.  Even if he needs some nighttime CPAPing, knowing that he can go many hours without the aid of a ventilator makes the idea of being parents  at home that much less daunting.  It means he can move from one room to the next without needing the machine to go with him, or even travel from our house to the park or a doctors appointment without a machine.  What liberation for a little one… and for all three of us!

In the past few days we’ve been doing more to get ready for Lucas coming home.  We’ve been taking loads of frozen breast milk home from the hospital, fixing clogged drains around the house, and looking for living room furniture that we can sit and hold Lucas in.  Last night Burke assembled Lucas’s stroller — a sight so strange we had to get pictures to prove it.  Today we’ll choose a home nursing agency and order the medical equipment that he needs. We’ve also finally done all the training and passed all the tests, including changing his trach without assistance from a nurse.  Since Lucas’s time line for leaving the hospital is mostly out of our control (it’s mostly up to the insurance-home-medical-industrial-complex at this point), we’re doing our best to be patient while we enjoy our time with him in the hospital.

Here’s a slideshow of photos from the last month: