Lucas Camilo

As Lucas continues riding the high of his Halloween night popularity at the NICU, we’re getting frustrated with the slow progress on bringing him home.  He’s ready, we’re ready, but as the neonatologist said this morning “we still need to get our ducks in a row.”  Those ducks include hiring a home nursing agency; renting medical equipment; spending a night with Lucas in the hospital with all his home equipment; getting a pediatrician; setting up follow-up appointments with various specialists; and getting the discharge papers signed so we can hit the road!

Most of that is done, but the biggest challenge remains getting our private insurance company to pay for anything beyond Lucas’s hospital stay.  Amazingly, they’ve paid for almost every cent of his care in the NICU so far, which we can only estimate to be in the many hundreds of thousands of dollars.  But just as amazingly, it would seem that they’d rather keep paying for him to be in the hospital than go home with nursing and special equipment, despite the fact that he’s ready to leave and it would be far cheaper to get him home (plus, it would open up another room at Children’s for a baby that really needs to be there.)  In the end, they’ll probably only cover the nursing for a short period of time, if at all, and paying for the medical equipment is totally up in the air.

So we began pursuing plan B awhile back expecting this would be the case.  At first it was going well – we applied for Medicaid so that he would become immediately eligible for assistance under the Health Services for Children with Special Needs (HSCSN) program in Washington DC.  We met the right people, got on the fast track for Medicaid approval, and found out that HSCSN will cover everything that isn’t covered by our private insurance.  But we’ve been waiting for 5 days for a supervisor somewhere to check a box so that Lucas will receive an official number that we can pass on to the nursing agency and equipment rental company.  Supposedly he’s been approved but just needs that final nod from the elusive supervisor.

We’re in a unique position where we could in fact cover some of these expenses out-of-pocket, at least initially.  But we have no idea how long Lucas will need nursing, a ventilator, and other mechanical support, and it’s expensive stuff.  The bills would start racking up pretty darn fast and so we don’t want to go down that road.  We’re getting a lot of support from the case managers and the hospital and making a lot of calls on our own to try to speed things along.  We’ll wait a few more days  and hopefully everything will be ready to go by the end of the week.

In the meantime, Lucas got his first REAL bath the other day and it sure was fun! (usually we just give him a sponge bath which gets boring after a while).  We filled up a tub with warm water, disconnected all his probes, and plopped his tinny bum into the tub.  And whatya know, not only was it a thrill for his parents but Lucas loved it too.  In the end we spread him out on the towel and got a shot of the long, skinny little guy that is our son.