Lucas Camilo

We’ve been home two days now, and Lucas is doing great!  We’re all adapting to our new environment, including all the home versions of the hospital gadgetry that Lucas needs.

Lucas was wide awake on his first day home, and we tried to play with him as much as possible while also coordinating with the people from the home medical supply company and the home nursing agency.  At 11 pm our nurse arrived.  For the next few weeks at least, Lucas will have a nurse with him at night so that if he has trouble breathing while we’re sleeping there is someone already awake and ready to help him.

When we got up Wednesday morning, Burke, Krista, Lucas, and nurse Marli all packed into the car with the stroller, travel ventilator, oxygen monitor, and car battery to power it all and drove downtown.  Between travel time, waiting for the doctor, and our actual visit, we were out of the house almost three hours, and once again Lucas did great.  His new pediatrician is wonderful, and she immediately noticed how cute Lucas is.  The biggest news coming out of the visit was that Lucas has broken the eight pound barrier, with four ounces to spare!

Since then, the past day and a half of our life at home has felt mostly like “normal” family-with-baby life.  Lucas eats, sleeps, poops, and wiggles.  We get to hold him when he’s fussy and take naps with him lying on our chest.  And we have moments that are unique to Lucas — a couple times a day his trach gets semi-clogged with mucus from his lungs and we turn on his home suction machine to pull the clogs out of his throat.  It’s not what we pictured when we imagined parenting, but it’s becoming a “normal” part of our being a family.

Since we’ve been home Lucas has been awake a lot, looking around and admiring his new surroundings.  He quickly noticed the two mobiles dangling monkeys, birds, and butterflies over his crib.  On the ledge further above his crib we’ve put all the items that people brought to the altar at our commitment celebration in June, so when Lucas cranes his neck he can also see a jar of beans, a Virgin Mary, a heart shaped rock, Silvio Rodriguez and Mudhoney albums, a janky picture show, flower seeds, and a quote from the martyred Salvadoran Archbishop Oscar Romero.  Since Lucas isn’t supposed to have visitors for a while, it’s nice to have surrounded his crib with items from many of the people excited to meet him soon.

In other news, Lucas appeared in his first mainstream newspaper article today.  Actually, it was his dad who was featured in a Washington Post article with the subtitle “Young heirs seek moral balance between inherited windfalls, social responsibilities”.  It’s a poorly written article, not at all what Burke imagined when he agreed to be interviewed for the piece, but it does highlight the work of two organizations that we care a lot about, CISPES and Resource Generation.  Burke hopes that despite it’s many shortcomings the article will encourage some people to become politically active around international solidarity campaigns and get people interested in the work of CISPES.  Also, it should inspire a few young people with wealth and progressive values to seek forums for thinking through what it means to have privilege, and ultimately convince them to give away more money to worthy causes.  That would be cool.

Finally, it’s a beautiful fall day in Washington DC and the tree outside our apartment is simply majestic.  Just another reason that its good to be snuggled into our home. And speaking of home, we can’t write today without mentioning our wonderful neighbors who’ve brought us food every night this week and thereby allowed us to focus our attention on Lucas – muchas gracias!!

(note: see the next post for pictures from Lucas’s triumphant return home)

It’s funny, way back when we first started talking about “the path home” we heard from a veteran NICU parent that it’s best not to mention the “h” word – it’s a jinx.  A month after starting to think about bringing Lucas home from the hospital we realize how right she was.  Just about everything that we could imagine blocking Lucas’s hospital escape came up, from insurance company battles to complications with home care, to someone having jury duty (don’t ask!)… but through it all Lucas remained solid, slowly continuing on his path to recovery.  Today he finally got to come home.

We were actually pretty nervous this morning, despite spending a mellow night at the hospital rooming in with Lucas.  We’ve been doing all of Lucas’s care lately but there are always nurses and doctors close by to provide advice and security if something goes wrong; meanwhile, Lucas still depends on a number of  props to either assist with his breathing or monitor his vital signs, so loading up the stroller is pretty darn complicated.  Right when we got it all done and started feeling confident the word came down that the discharge pages were still being filled out by the resident – argg!  So we paced around for another 10 minutes before kicking the stroller into gear.

Then we were in the hospital garage with Lucas strapped into his car seat and for some unknown reason there was a major traffic jam… plus, Lucas’s vent started beeping.  Oh shit.  But we kept our calm and made it out of the garage and on to home in 20 minutes.  The rest was kind of a blur until suddenly there we were, standing over him laying in his own crib for the first time.  It brought tears to our eyes.

As the anxiety/euphoria begins to wear off from the return home we’re struck by a comment on a previous blog post, which is that we’ve been providing “home” for Lucas all along.  Well it’s true that we were been able to create a special place for Lucas at the hospital – we virtually lived at Children’s over the past 3 months and got to do many of the things that new parents do with their baby – at the same time there’s no doubt that it’s very different to be in our comfortable basement apartment with the little guy.  As much as we love the friends we made at Children’s, it will be nice not to have someone sweeping in to weigh Lucas’s every poop.

In the end, it’s really just the beginning of another stage in our journey together as a family.  Being out of the hospital certainly doesn’t mean an end to dealing with Lucas’s health – you need only see our list of follow up appointments to know that there’s a long path ahead for Lucas.  It does mean that we’ve collectively made huge strides forward: surviving, growing, flourishing, loving.  We’re happy to have you home, Lucas Camilo!

One day after his three month birthday Lucas has FINALLY arrived home.  We left the hospital around 10:15 this morning and had everything set up in his new crib by 11. Yipee!! (more later…)

Special outfit for the road

With some favorite nurses on the way out the door

Pulling up to the new house (no, he didn't ride on top of the car :)

First time in the crib!

Checking out the new gigs with mom

(A photo essay by Lucas… well not really, but what we’d imagine he’d be thinking if he were a little older)

Last night I got to spend a whole night with my parents for the first time.  It was awesome!  I mean, I slept a lot of the night, and there was this one annoying nurse that kept coming in the room and checking on them even though it seemed to me that everything was under control… but other than that I had a lot of fun!

First they wheeled me down a really long hall into a room that I’d never seen before and we passed lots of smiling people on the way.  Come to think of it, I’ve spent most of my life in the exact same place so anytime I get moving it’s a real thrill.

Next up they dressed me in an organic onesie that I heard was a present from my grandma Nonna.  Boy did it feel smooth and nice, though I accidentally puked on it a little bit during my evening feed.

As the night wore on I realized that my parents weren’t leaving, that they were going to hold me or sit by my side the whole night.  My dad was there talking to me and keeping an eye out while I did my thing.  They put on a movie but I decided not to watch since I probably wouldn’t get the jokes.

At one point I got to get out of the crib – they put me on the big white bed and there was all this room and it felt really nice.  Then mommy laid down next to me and we cuddled for a while.  That was the best.

In the end I thought my parents did great and as far as I could tell we were safe to hit the road, to go on our way to this cool place that I’ve heard everyone call “home”.  But then I heard my daddy arguing with someone on the phone and decided to take another nap.  By the time I woke up the word was out that we were going to have to stick around a little longer, until Wednesday morning, in this new room.  Man, that “home” place really is elusive! (or so I’ve heard it referred to, I don’t actually know what “elusive” means…)

We’re reporting from the hospital tonight where Lucas has been transferred to the parent room for our final test before discharge. Having gone 2 days now on the home vent with no problems, all that’s left is for us to spend the night alongside him taking on the tasks (feeding, suctioning, changing diapers, giving him his meds, and anything else that might come up) usually done by the nurses overnight. We can’t wait to spend a whole night with Lucas and we really can’t wait to do it at home… if all goes as planned and we manage to convince the equipment rental company that he’s ready  for an evening discharge then we should be home by Monday night. For now we’re warming up to our temporary digs and getting ready to watch a movie with Lucas for the first time…

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.

Other than playing with Lucas (now that he’s awake so often) and holding him, perhaps our most frequent interaction with the little guy involves suctioning.   That’s right, suctioning.  As we’ve mentioned before, he doesn’t swallow a lot and at the same time manages to generate copious amounts of mucus in his throat, a rough combination.   The saliva and mucus build up and ultimately we have to use an electronic suction device, sometimes as often as every few hours, to clean him up.  He’s gotten better at coughing up the mucus on his own, especially when rolled onto his side, but he still needs the suctioning to keep from drowning (and, we should mention that lately the nurses have been impressed with our deft ability to pull big mucus plugs out of the corners of his mouth.)  We also occasionally suction down his trach with a sterile catheter to get the secretions that have built up lower down in his trachea and lungs, but its nothing like what comes out of his nose and mouth.

Today Lucas is especially full of boogies and it may be because he has a little cold.   It doesn’t seem to be phasing him since he continues to wiggle and stare at us with wide eyes while putting his hand up to his face and rubbing the saliva all around.  Mmmmmm.  We found the perfect song for him on a CD given to us by our friends Andy and Susan in New York.  It’s called “Boogers” and is written and performed by the activist/folk singer David Rovics.
[audio:Boogers.mp3]

Things are finally moving forward again towards Lucas’s discharge: the new medical equipment rental company and our insurance have reached an agreement for pricing on the equipment Lucas needs to go home (“almost 100% for sure, but don’t quote me on that”, according to the respiratory tech from the company.) That the equipment will all arrive by Friday is a “definite maybe” and having Lucas home by Tuesday or Wednesday at the latest is “basically a done deal”. We couldn’t be happier and more confident about where things are at ;)

Little Lucas Camilo seems genuinely content, resting comfortable in mommy’s arms this morning as she knits him some new gear. We told him about all the gifts and cards that he received at the welcome-home-Lucas party at our apartment on Sunday (since he wasn’t able to attend), and brought in some new hand-me-down onsies for him to wear that don’t need the feet cut out to fit his extra-long legs.

As we hunker down at the hospital, we’ve been saddened by the news of destruction in El Salvador following four hours of torrential rain on Saturday. Over 130 people have been killed and according to the CISPES alert that went out earlier this week, “Rescue teams are removing tons of mud, rubble and trees in search of over 70 people who are still missing, most from the community of Verapaz.” Since we both lived in El Salvador for extended periods of time and remain close to many people there the devastation of Hurricane Ida really hits home. You can donate money to the relief effort and find out more at the CISPES website.