Lucas Camilo

Well, leave it to the bureaucratic mess of the health care system* to finally get it right on Friday the 13th. The ventilator (or “laptop vent”) that Lucas needs to leave the hospital arrived yesterday – a major step toward home!

But before it arrived, we had yet another health insurance scare. The new equipment rental company – the one that said it was “basically a 100% for sure done-deal” during a home assessment earlier in the week – suddenly hit a wall getting authorized by our insurance company, United Healthcare. We’ll spare the details, but can’t help but mention that this is the same insurance company that emailed its 75,000 employees the other day to insist they lobby against “the public option” as part of the health reform legislation. Which is to say that they are evil. Needless to say, we went through moments of dread, thinking that we were back in the same deadlock we were in a week ago. But within an hour of getting the bad news we were able to work things out with our secondary insurance, the federally funded HSCSN program (which Lucas is eligible for because he’s still vent-dependent) as they agreed to cover everything that United refuses. Hallelujah! Thank goodness for a health insurance plan that covers everything that is medically necessary and has a quick-to-respond staff who actually fix problems. (Did we mention that this is our PUBLIC option?!?)

The other big development on Friday was that Lucas took one more step away from the vent, using what’s called a heat moisture exchanger (HME)… and he did really well! An HME is an attachment that a person with a trach uses when they don’t need a ventilator to breath. It’s a small cylinder that functions like our upper airway in that it filters and humidifies the air before it enters the airway (hence the HME’s more popular name, the “nose”). Unlike the trach collar, there’s no air flowing to the site of the trach, so Lucas has to work a little bit harder to draw in breaths. The huge advantage is that there is no tubing or machinery involved, so it makes him a much freer baby.

It was incredibly exciting when we turned off the vent and put on the “nose” — Lucas was free to move away from all the machines for the first time in his life. Krista held him and walked him around his room, turning around in full circles and showing him the view out his window. He spent about three hours with the nose on, and although he seemed extra tired at the end of the day he never complained about the extra work. It’s that much more exciting now to picture going on walks or visiting friends without necessarily needing to bring a whole ventilator with us. Go Lucas!

* Note: when we refer to the “bureaucratic mess of a health care system” we mean the way the whole thing works, not the health care providers. We’ve said it before, but we continue to be incredibly moved by the way that so many people at Children’s — from our case managers to nurses to respiratory technicians to neonatologists to surgeons to custodial staff — have worked so hard and shown so much care for Lucas and the two of us. So our frustration is with the larger system of health care distribution, not with the individual health care providers who work within it.