Lucas Camilo

Lucas had another solid day today: lots of awake time and wiggling, an impressive sucking performance during the visit of our favorite occupational therapist, and a test run on even lower vent settings.   He’s still keeping us on our toes with the occasional puke, but they’re mostly small and meaning that he’s holding down about 95% of his milk.  Plus, we got the news during rounds that all those calories have him tipping the scales at 7 and a half pounds!  That’s double his low weight of 3 pounds 12 ounces from a few days after he was born.

He’s also looking really cute these days and starting to try out some different Halloween costumes.  So far the bunny remains the favorite…

On Monday afternoon we changed Lucas’s trach for the first time.  We had received a 2-hour long workshop last week, and had performed a trach change on a cabbage-patch doll, but this was the real thing.  It went fine, and now that we’re feeling confident enough about our ability to take care of Lucas’s trach we figured we’d elaborate on what it’s all about.

Before Lucas’s surgery we explained why the doctor’s recommended a tracheostomy for him (see “Gettting ready for surgery”).  Basically, the muscles in his upper airway are still too weak to hold his throat open wide enough to breath effectively on his own through his nose and mouth.  Since Lucas continues to get stronger we’re confident that his trach is a temporary step, but it’s also a commitment: once the surgery is done they expect a child to have the trach for at least 3-4 month before considering removing it.  As we mentioned the other day Lucas is doing great on his breathing, and he probably won’t even need the ventilator after a while (we’ll test him off the vent, on a “trach collar”, before we leave the hospital).  But still, the trach is going to be a part of his life, and therefore our lives, for a while so we’re doing all we can to learn how it works.

The trach itself is a small piece of hard plastic that fits into Lucas’s stoma (the hole in his neck made by the surgeon ).  It becomes his principal airway, though because there is a small leak he’s also able to do some breathing around the trach through his nose and mouth.  It occasionally gets clogged up with mucus, so one of the things that we’ve learned to do over the last week is suction out the trach using a small, sterilized catheter suction tube.  Sterility is very important since the trach is a much more direct access-point to Lucas’s lungs.  Therefore, we also need to clean a couple times a day around the stoma and replace the “trach ties” (which hold the trach in place and sometimes get sweaty).  All of these procedures are complicated by the fact that Lucas is still connected to a vent, the tubing of which can pop off the trach at any time if we’re not careful.

Already the nurses have pretty much turned over the duties of Lucas’s trach care to us, though they do keep an eye on our technique and make recommendations.  The big step was the aforementioned trach change, which involves actually removing the trach itself (which Krista did) and placing a new one in its place (which Burke did).  The trach IS what allows Lucas to breath, so if something were to go wrong during that process then he would go into distress.  Of course, that’s why there are also emergency items on hand, such as a smaller size trach and most importantly, the “bag” which allows us to get oxygen to Lucas if he stops breathing on his own or something temporarily clogs his airway.

For those that want to know more, you can check out this good, long description of all that goes into trach care.  And below you can watch a couple clips from a cheesy video that made by Shiley, the brand of trach that Lucas wears.  The second part shows all the items we’ll need to carry along with us when we take Lucas for a walk in the park (we just picked up a stroller that accommodates his car seat and has a hefty compartment for storing items on those journeys out of the house.)

Last Friday we had another “family meeting”. We sat down with the neonatologist, a social worker, and Lucas’s case manager to talk about a plan for discharge. During the meeting we found out some new, challenging information about our insurance plan that may limit our options for home nursing.  Needless to say, we’ve got a lot of investigation and discussion to do over the next week, which is never fun when you’re talking about dealing with the private insurance industry.  We’re not going to get into details right now, but the setback was frustrating precisely because Lucas is doing so well and on the path to go home.

Though he’s continued to have a few throw-up episodes, Lucas is doing great taking milk and is now back to full feeds – about 500 milliliters of breast milk a day!  (At that rate, what’s a few little spit ups of 5 or 10 ml?)  This is good news because one of the main criteria for getting to leave the hospital is being able to tolerate full feeds.  The night-nurse who’s had Lucas lately has been funny whenever we call to see how he’s doing at 11:30 pm, saying triumphantly “he hasn’t puked yet!”  We know that feeding can be a huge challenge and that he’s probably not in the clear yet, but he’s made so much progress since the urinary tract infection started the vomiting trend a few weeks back.

He’s also doing great on his breathing.  Starting on Saturday morning he went to the CPAP mode of the vent, meaning he’s no longer getting assisted breaths, just some extra pressure.  Already his vent settings were about as low as they could go, so if he keeps doing well on the CPAP they may actually test him off the vent at some point, placing what they call a “trach collar” so that he still gets humidified air into his lungs.  There’s a chance, then, that we wouldn’t need a home-ventilator for that long, but rather could move to and smaller and less complicated humidifier.  Again, we’re not getting our hopes up too high but it does feel good to see him breathing so well.

Finally, the good folks from physical and occupational therapy have been spending time with Lucas lately and are impressed with his progress.  They brought some new thumb splints for him to wear but then decided he didn’t need them since he was moving his hands so well.  We continue to do stretching and range-of-motion exercises with him everyday, and there’s no doubt that he’s getting stronger.  We’re even starting to see him roll big head around, if only slightly.

The best demonstration, though, was this morning with a wonderful woman from occupational therapy.  She had him practicing his suck and swallow, and after a slow start, he really got into it, especially when we introduced a little sugar water.  Though he’s still pooling a lot of secretions in the back of his throat, once they get suctioned out he can actually suck on a finger, swallow small amounts AND coordinate breathing.  We were both almost moved to tears by the whole exercise and the positive energy of the occupational therapist; this sucking coordination is a big step toward being able to breastfeed.

So as we investigate and grapple with our health care options for Lucas, we look  forward to another week of steady progress… now if only those pesky stuffed animals would stop bugging him all the time!

(Here’s a picture that our friends in El Salvador will really appreciate.  Thanks to Heyward, Alexis and Sandra for finding Lucas the smallest Frente shirt around! Gracias a Sandra,  Alexis, y Heyward por la camiseta roja! Lucas dice, “presente en la lucha!”)

Dad and Lucas were a little bored this morning so they decided to make a video.  You can watch it in two parts below or  click here if you have quicktime.  (Incidentally, we got sick of all the annoying ads on Youtube which is why Lucas can be seen exclusively on Flickr now… you can check out all his photos and videos here.  However, Flickr only allows 90 second videos which is why this is in two parts.)

Part 2, “Who’s my favorite friend?”

The change in weather in Washington DC makes us realize just how long we’ve been in the hospital with Lucas.  When he was born on August 17 it was at the start of a week in which it hit 90 degrees every day with 90 percent humidity.  We’ll never forget that following weekend – Lucas’s condition was still very unstable – when we managed to get away from the hospital to finish moving into our new apartment.  It was a sweltering day and a dozen sweaty friends (along with Burke’s family) helped us make the transition to our new place on Irving street.

Now, two months after Lucas was born, we’re in the midst of three straight days of temperatures in the low-40s with constant rain and drizzle.  We stare out the window of Lucas’s room at the NICU and imagine that we’re back in the Pacific Northwest.

The weather both makes us nostalgic and makes us want to crawl back in bed sometimes.  Lucas, on the other hand, isn’t phased by the dark, gloomy days.  On the contrary, he’s been more active then ever before.  Not long ago he rarely was awake more then twice a day, and usually for only very brief spurts.  Now he wakes up a lot, and getting moved around during his cares often brings him out of his slumber.  During his bath last night he wiggled and grimaced and smiled and wiggled some more (check out the video at the end of this post).  This morning he was asleep when we came in but woke up shortly thereafter and kept his eyes open while in Krista’s arms.  Back in the day holding him was so soothing that he always passed out cold when we took him out of the crib.

They that say preemies sleep 23 hours a day, and for a while Lucas was pushing the envelope.  They also say that preemies tend to snap out of their dreamy state right around the time of their due date, so perhaps it makes sense that Lucas is more alert this week.  His original due date was October 22, though it was revised to early October (based on some ultrasound results) and we tend to split the difference, making his “corrected age” about zero.  Though it’s crazy to think that the plan was for Lucas to be entering the world right around now, the little guy seems to have a sense of that timetable.  And his new found wakefulness and expressiveness is making the dark, rainy days that much brighter for us.

all clean after the bath... and my stylish gown matches with mom!

Last night was up and down for Lucas: he spit up a couple times in the early evening, and all the commotion from the clean-up helped wake him up. Then, he took advantage of a visit from Krista’s friend Laura* to show off his cuteness, curling his lips up for the biggest smiles we’ve ever seen out of the little guy. Maybe he grinned because he felt relieved to clear his tummy of a big air bubble… though the smiles soon turned to grimaces again a little later, leading to another puke. Finally, his feeding was delayed for a hour which was enough to get him back on track with his milk for the rest of the night, and he’s still going well today.

This morning Lucas was made famous as the “Hanson family” was invited to speak at a forum on nursing excellence. They were short on male speakers and since Lucas wasn’t available Burke ended up taking the stage (the invite said “business casual” which was a bit of a stretch for dad, but he pulled it off). Children’s National Medical Center is applying for Magnet Recognition for nursing and this week is the big assessment; the main evaluator stood front and center in the brand new auditorium as various parents (as well as some former and current patients) testified to the quality of nursing at Children’s.

Burke speaks (check out the tucked-in shirt!)

Burke talked about Lucas’s tough beginning and how much we’ve appreciated getting to be so close to Lucas, being part of his care, and learning from the nurses along the way. It was especially moving for us to hear other stories of kids afflicted with different diseases and conditions who have overcome the odds and were thriving in the world.

*note: sadly, starting today they’ll be no more visitors (except parents) allowed into the Children’s NICU. We got the memo yesterday about the extra precautions being taken for flu season. All the more reason to get Lucas home muy pronto!

One of Burke’s favorite times of the day with Lucas is the early morning: he gets to the hospital around 7:30 am most days and has a couple hours with the little guy before things get bustling in the halls of the NICU.  Its a great time to rock Lucas’s favorite children’s albums over the laptop, and its also a time when Lucas sometimes wakes up and gets his sunrise wiggle on.  When the nurses are out of the room, Burke sings along with Pete Seeger, and has re-memorized all the words to “Puff the Magic Dragon”.

In the next few days we’ll lay out a timetable for Lucas’s homecoming to Irving St. and needless to say we’re very excited, but also quite nervous.  Like the peaceful morning sessions that Burke and Lucas share, we realize that there are actually a few things that we’ll miss about the last two months in the hospital.  For example, having highly-trained, free “babysitters” around the clock is a pretty sweet deal!  Of course the nurses, residents and respiratory therapists who look after Lucas at night are a lot more than babysitters, but the point is that in the evening or on those rare occasions when we decide to drop by a protest or go to a movie, we know that someone will be with Lucas to make sure all is well.

Perhaps the biggest challenge ahead, then, involves us taking the lead on a lot of the responsibilities previously held by others.  A few weeks ago this wouldn’t have been possible, but Lucas’s gradual progress has opened up the prospect of leaving the hospital.  But though he’s getting better all the time, he remains a baby with special needs, and the new accessories he has acquired post-surgery are the most glaring examples of that: he can’t breathe on his own for now, and he feeds through a tube.  He’s also hypotonic, and though his strength and muscle tone has increased, he still doesn’t move around as much as a baby his size and age usually does.

So bringing Lucas home won’t be the usual baby homecoming, nor will it be what preemie parents think of when they imagine the storybook ending to a traumatic NICU experience.  Rather, it’s an unpredictable transition for us and Lucas, one that will involve a lot of patience, training, and anxiety.  We’ve got to learn how to suction his trach, clean the area around the g-tube, and what to do in an emergency… and that’s just the beginning.

Over the last two days Lucas has hit a little rough patch on his road home.  Things started off well today as he was back in mommy’s arms after a week-long post-surgery hiatus.  But the holding didn’t last too long as he had to jump back into the crib for a hearing test, and part way through that he threw up, so they had to delay the test until later.  To top it all off we humiliated him by giving him a comb-over following his bath.  He’s back on track now, sucking on his pacifier and looking around with open eyes.

Yesterday his urinary tract was tested and they found that he has Vesicoureteral Reflux, (VUR) which means that some urine finds its way back up towards his kidney.  His VUR  is only stage 2 (with 5 being the worst) so for now Lucas just needs a low-dose of antibiotics that will help avoid future UTIs (like the one he got a few weeks back.)  So we’re still encountering hurdles, and we’re still meeting with doctors, and at the end of each long, tiring, day we still pack up and head for home.  But not for long.  Because soon we’ll finish a long, tiring day and we’ll look around and find that we’re already at home.  And that’s great… even if its also a little scary.

Life with Lucas in the NICU on this “Day of Indigenous Resistance” was pretty uneventful. His trach seems to be doing it’s job: with a more stable airway Lucas has had no episodes of apnea or “desats” (low oxygen levels) over the last 24 hours. In fact, the ventilator settings are down to about as low as they can go again and Lucas is taking a lot of breaths over the machine.

Unfortunately, Lucas puked more in the night while we were gone, so the doctors have slowed his feeding schedule and taken the fortifiers out of the breast milk to see if that does the trick. Of course, we suspected all along that breast milk couldn’t get any better, but the doctors wanted to beef Lucas up (as do we), so they’ve been adding a few extra calories to his milk. When Lucas got weighed on Sunday he was up over seven pounds (!!), so maybe those few extra fortifying calories did their job, but just aren’t necessary any more. Anyway, after suspending his feeding for a while, he’s now been getting straight milk all afternoon and is keeping it down so far.  Which is to say that “uneventful” is a good thing today.

Speaking of breast milk, we continue to receive wonderful support in the form of food (which Krista quickly converts to milk) from many friends – thank you, thank you, thank you!  We’ve said it before, but we feel so much gratitude to everyone who has come and visited or brought us food or sent us music or blankets or Vermont maple syrup or loaned us clothes or offered advice or held us in their thoughts and prayers. While Lucas is growing and getting better every day, he still faces a long road of gaining strength and learning to breathe, eat, and move in the world. And like all parents, we’re better able to be there for our kid when we have support.

Many of those who have been there for us are friends/comrades we know through the groups we’ve been most involved in: namely, CISPES, Jobs with Justice, Resource Generation, and the All Souls Unitarian Universalist Church.  Organizing is all about building community, and we feel privileged to have such a wonderful community through the activist work we’ve participated in.  The CISPES crew has been there every step of the way, visiting us frequently while also keeping Burke busy with phone calls and emails (he’s still working part-time as he transitions out of his executive director job); meanwhile, the good folks at Jobs with Justice (where Krista worked for over a year) and Resource Generation (where Burke is now on the board) have sent cards and flowers and also brought us food.  Finally, generous friends from All Souls Church (where Krista has become a member of the community) have cooked more lasagnas and other tasty treats than we know what to do with.

Even folks we’re just getting to know, like our new neighbors at Mother Irving (the name of the 3 adjacent houses we’re now a part of), have been generous, bringing us food, sharing freezer space, and even checking in with us about noise levels at future house events.  If Lucas can sleep through having tape peeled off his face he can probably sleep through some ghoulish yelps from the upcoming haunted house next door. But nonetheless, it’s nice to have our new neighbors looking forward to Lucas’ homecoming and worrying about his well being.

Later this week we’ll get a tracheostomy training at the hospital and at that point we plan to give a little virtual tour of Lucas’s new accessory.  For now, here’s a quick video of mom bragging about his finger-sucking…