Lucas Camilo

We finally got some breaks yesterday afternoon.  It turns out there is another medical supply company in the DC area with a pediatric home ventilator AND that will work with our insurance!  How this happened is a bit of a mystery — our doctor got involved (thank you Dr. Stone!), and our caseworker got other people high up in the hospital administration involved.  Some calls were placed, more pressure was exerted (we hear it went all the way up to the DC government), and suddenly our insurance company called and said we could rent from this new medical supply company.

The bad news is that starting over with a new supply company means more waiting.  This afternoon they’ll come by our house to assess our power supply.  It’ll take a couple more days to get us all the equipment (to be fair — it’s a long list of stuff Lucas needs), and then a couple more days to train us to use it before we can go home.  This puts Lucas’s new estimated date of release from the hospital right around his three month birthday.  It feels like a major test of our patience, but at least the news has calmed Lucas’s angry outbursts and long tirades against the health insurance industry.

Lucas gives the finger to United (we swear we didn't put him up to it)

Starting early this morning we jumped back into the ring with United Health Care and have been on the phone and talking with various people at the hospital most of the day. There’s nothing new to report at this point, but with lots of separate fronts of attack underway we’re hoping for a resolution in the coming days that will allow for Lucas to be home by the end of the week, if not sooner. For now, we won’t go into details and instead focus on another one of Lucas’s health challenges.

A few weeks back we gave an overview of Lucas’s tracheostomy and the breathing troubles that led to surgery. The trach is a very visible display of what’s tough for Lucas at this point in his life but he also has a more inconspicuous accessory that doesn’t get talked about as much: the gastrostomy tube or g-tube.

Lucas has come a long way since the early weeks of his life, but he still isn’t ready to feed orally. Therefore, the g-tube provides a direct passage into his stomach for the breast milk that gives him the calories he needs to grow. He had the surgery to place the “Mic-key” g-tube at the same time as the tracheostomy and it’s healed nicely, much like the trach. The device itself is pretty straightforward: a tiny balloon on the inside of his stomach holds the entry point (or “button”) in place, and the tube can be connected or disconnected very easily to the button. The milk is then pumped through the tube (about 2.4 ounces every 3 hours for a total of about 19 ounces a day) and digested by Lucas as if it had arrived via the traditional route of the esophagus. (Check out the video at the end of this post to see the g-tube button, which is on the left side of his belly.)

The insertion of the g-tube is a temporary course of action as Lucas continues to develop his oral feeding skills. His suck is getting stronger and more consistent everyday, and if that were all it took he’d probably be ready to go. But of course you have to be able to swallow to get the food down and Lucas is still slowly developing that reflex. At this point he doesn’t swallow enough to be able to keep down all the secretions that people build up in their mouths and noses everyday, and therefore we frequently have to suction the spit and mucus from his inside his cheeks, nose, and the back of his throat. He also has a weak gag reflex meaning that if milk were to start to go down the wrong pipe he wouldn’t be able to cough it back up, making him a risk for aspiration (i.e. having milk go into the lungs, not good!)

So for now Lucas will have a feeding pump when he gets home and will continue to receive breast milk eight times a day though the g-tube. It’s fairly easy to take care of and maintain, and we can continue to increase the feeds to help him put on weight. At the same time, we’ll be working with occupational therapists to continue developing his suck/swallow/breath coordination and especially to practice swallowing so that he’s ready to eat through his mouth someday soon.

Friday came and went without the equipment arriving, meaning that Lucas’s homecoming will not happen on Monday.  We appreciate all your messages expressing frustration and solidarity (though Lucas has been a little disappointed at the number of public comments on his blog lately), and we’re confident that things will move forward this next week.  In the meantime, we’re having a little gathering this afternoon to celebrate Lucas getting released from the hospital.  Once he’s home we’re going to have to be careful about having a lot of people over – because of germs during flu season – so we figured we’d throw a housewarming/welcome Lucas party before he actually arrives.  We’re trying to see if we can get a live video feed from room 638 at Children’s.

And what about the little guy?  In all the hubbub about health insurance and medical equipment we haven’t gotten around to writing about Lucas himself for a number of days.  Well, we’re happy to report that he’s doing great, as ready as ever to leave the hospital.  He had a couple little bouts with vomiting yesterday but in general continues to hold down his food and gain weight.  He’s also been spending more time off the vent, and yesterday one of the respiratory therapists who has a lot of confidence in Lucas made the executive decision to leave him on the trach collar for about 5 hours (though it was only supposed to be 1-2).  He did fine, breathing steadily throughout and not building up many secretions in his trach, which happened the previous time he was off the vent for an extended period.

Perhaps best was his performance on Friday while we were running around talking on the phone to case managers, insurance representatives, doctors, and medical rental companies.  In the midst of it all, Lucas got very fussy – turning red-faced with an elevated heart rate – and was awake for nearly 6 hours straight, by far the longest such stretch ever.  Obviously he was pissed off about the health insurance situation like the rest of us, but what was interesting is that during that time he kept demanding his pacifier, and in fact it was the only thing that would keep him from throwing a fit.  We were a little worried for a while but then realized that he was just acting like a typical 2 1/2 month old baby.  That being said, we never thought we’d be so excited to see him suck a pacifier (the name of the device is problematic enough – no righteous baby deserves to be pacified!) but seeing him work so long and steady on the “binky” was a real pleasure.

In other news, Lucas is already growing out of hand-me-down outfits that he hardly ever got to wear.  The real problem areas are his amazingly long limbs, especially his legs, which force us to turn pants into shorts.  We cut the feet off of the sweet alligator onesie that his aunt picked up for him at the newborn second-hand store, and he proceeded to sport the outfit for a couple days straight without puking on it!

A couple days ago Burke wore an old classic CISPES T-shirt into the hospital. It’s a cool shirt with three grainy, black and white photo images and the word “Resistencia” in big letters. When Lucas’s medical team came to his room for the morning rounds the doctors asked about the shirt. Burke thought they’d all love it, and he explained that the woman featured in the images is a nurse in El Salvador who is on strike to defend the public health care system. In the pictures she is bending over, picking up a rock, then winding up to throw the rock back at the riot police who are attacking the hospital where she works. Burke’s enthusiastic story was met with silence and awkward nods from the team, and perhaps that was fitting. Though there’s an acknowledgment around here about the failures of the current health system, few people are ready to hit the streets to make it change.

Which brings us to our current predicament. This past week our health insurance company has been testing every ounce of our patience. While Lucas is clearly ready to come home, our insurance is stalling his departure. For ten days now, somewhere in a United Health Insurance office, our list of medical equipment that Lucas needs to come home – including his vent and trachaestomy supplies – has been making it’s way from the fax machine in-box to someone’s desk. Every day we call and our case manager calls and we get a different answer about what it will take for someone to read the request. Finally yesterday morning we got word that they were going to OK the list of things that are clearly medically necessary and clearly covered by our insurance. Phew! We celebrated because the timing is down to the wire. We needed the approval yesterday so we could get the equipment into the hospital today so the hospital folks who screen the equipment could approve it before they go home for the weekend. Then Lucas will switch over to the home vent and we’ll practice with it over the weekend and bring him home on Monday.

And then a few hours later we got another call from United’s representatives. They said that they’ve OKed the out-of-network medical supply company and the list of items but they won’t pay the quoted rates. We asked if that means we’ll have to (or be able to) pay the difference, but have yet to get an answer. It is enough to make you want to pull your hair out and strangle someone with red tape. While Burke has tried to be level headed, and Lucas just looks cute and Zen-like throughout, Krista is trying frantically to find someone at United to call and scream and cry to… and to ask them if they’d be so difficult if it was their baby who had never seen the world outside the hospital walls. As our nurse over the last few days put it, “This would never happen in Poland!”

Indeed. During this time of a major national health care crisis, with Congress about to vote on measures that will just begin to fix the most egregious of problems (if not make certain things worse by mandating that everyone buy terrible private health insurance), questions about improving the quality and accessibility of health care suddenly feel very personal. Polls show that people who have health insurance are the ones who most fear health care reform, which is hard to understand given how terrible insurance companies are known to be. In our case, the red tape doesn’t even seem to respond to a profit motive – if United wanted to save money on us they’d do everything possible to get Lucas out of the hospital NICU asap.

Of course the government is known for red tape too, but in our case Medicaid/HSCSN has moved much faster than United, thanks in part to a couple people at the DC Medicaid office who helped us expedite our application so we could get home nursing for Lucas as quickly as possible. We applied for special coverage for Lucas two weeks ago – he’s eligible because he needs a ventilator to breathe – and on Monday we were accepted. By midday Tuesday a representative from the agency that works with kids with special needs kids in Washington DC came to the hospital to meet with us and tell us about the program. She told us that they will cover all Lucas’s medical bills that private insurance doesn’t. Wow. Imagine if everyone in this country had a person who visited them with those magical words. Thousands of people, maybe tens of thousands, would be spared bankruptcy, losing their homes, and total disruption of their lives. It’s a nice vision.

While this process has been difficult and emotionally trying, we’re also very aware of the fact that we have it easier than many, if not most, people in this country that struggle with health issues. For one thing, we actually have health insurance unlike millions of people in this country, and even if they screw us over sometimes, they are paying for most of Lucas’s enormous medical care. But there are other ways we have it good too. We’ve grown up with race and class privilege, which among other things has given us the tools and experience to work the system to our benefit. We know what questions to ask, who to push, when to wait, and where to look for other resources. And we usually get what we want in the end. Under normal circumstances we both try hard NOT to use our privilege for personal gain, but in this case we’re working it as much as possible for Lucas’s wellbeing, and at the same time trying not to take away from anyone else with less resources in the process. So although it is infuriating that we can’t make everything work on the exact timetable we’d like, we know that we’re doing our best for Lucas and that we’ll make sure he gets the best care possible out of a broken health care system.

And of course we’ll work not just to Lucas’s advantage, but also in advocating for a health care system in this country that takes care of everyone’s needs. And we’ll dream of the day when we can take “Resistencia” T-shirts to all of Lucas’s doctors and they’ll get excited about the idea of hitting the streets to expand a vibrant, holistic, high-quality public health care system. And we’ll dream of Lucas out there will his fist raised too.

We had to pull some strings but we finally got Burke’s parents into the NICU yesterday to visit Lucas. Actually, part of the deal around lifting the flu season restrictions on visitors was that Michael and Mary Jo had to do a training on tracheostomy care, which the nurse helped us give. They seemed to pay attention well and ask the right questions, and therefore will be well prepared to help look after Lucas the next time they come to town. They were also overwhelmed to see how far along Lucas has come since they last saw him over a month ago. He was wide awake an hour before they arrived – following an eye exam – and we were worried that he’d be conked by the time they got to the hospital. But he stayed awake and showed off a little, kicking his legs, opening his eyes wide, and letting us move him into all of his favorite positions. Burke’s mom got to hold Lucas, sing him “rock-a-bye baby” and tell him about his snazzy new home set-up. In addition to the crib the granparents helped install, Lucas now also has a fancy changing table (passed on by our friends Catherine and Basav) and a vibrating bassinet (a hand-me-down from friends Rami and Chrystal).

The other good news is that we finally have an actual date for Lucas to return home. It’s next Monday, which isn’t nearly as soon as we had hoped, but the equipment he needs probably won’t arrive until this Friday. Nothing is for sure, of course, but the doctor has signed off on the discharge so its just a matter of waiting a few more days and making sure we’re all ready (which, as we’ve noted over and over, we are).

The final piece of good news: Lucas is growing again! He gained 60 grams last night, the second day in a row that he’s gained weight, and he’s inching his way back up towards the elusive 8 pound mark (he’s at around 7 pounds 4 ounces right now). We’ve heard that preemies really thrive in the weight gain category once they get home, which is just one more reason to be excited.

And finally, Lucas is spending a lot of time sucking on his fingers and fist lately, not to mention exploring all around his face. Here’s a latest video…

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.