Lucas Camilo

(Burke writing) I made it out to Seattle on Wednesday for a brief trip, the goal of which is to do some reconnaissance for our potential move to the Northwest, as well as hang out with my family, who I haven’t seen all together since last summer.  Though we’re still a ways away from starting to pack up and leave DC, we are beginning a process (as we talked about last month) that will move us in that direction.  The first step is to figure out if Seattle and Portland – our two options – have everything Lucas needs for a good transition to occur.

In the last few days I’ve visited with doctors, preschools, and parents to learn about what Seattle has available.  It’s been an enlightening trip so far, and without making any conclusions or going too deep into details (because I don’t have much time to write), I did want to share a few things that I’ve learned.

First, even at places that are set up for kids with special needs like the Boyer Children’s Clinic and the EEU (both of which I had the opportunity to visit with my mom), there aren’t a lot of kids that look like Lucas.  Actually, there weren’t any kids with vents and/or trachs in the classrooms we observed.  I guess that’s logical since the most common disabilities that kids have don’t involve severe muscle weakness in the way that MTM does.  But it was still discouraging: on one hand, visiting classrooms, seeing 2 year-olds with disabilities participating, and talking with teachers made the possibility of Lucas someday being part of such a classroom real; on the other hand, the absence of medically fragile kids in those spaces made it difficult to actually envision.

Which made the experience yesterday of meeting another family with a child who has Myotubular Myopathy all the more amazing.  I connected with the McLaurin family through Facebook (many MTM parents are part of Facebook support groups) and they invited me to stop by their house north of Seattle yesterday afternoon.  It was wonderful to meet 3 1/2 year -old Trent and see how well he is doing: using sign language, holding himself up, taking part in the world around him.  His special needs are very similar to Lucas – trach, vent, and feeding tube being the most visible examples – but there are also things about Trent that are distinct (“every boy is different”, said his mom, who has had the opportunity to meet a number of other MTM families).  From the experience I know that Lucas is going to be excited to meet Trent and other little boys with MTM someday, and I know Krista will be excited to meet his parents.  Perhaps the best part of the visit was getting to talk to them and hear how similar we are in our outlooks about MTM, navigating the world of disability, and being strong advocates for our kids.

Finally, I miss Lucas!  It’s such an exciting stage that he’s going through right now, developing his ability to communicate through sign language, that it’s hard to be away for even 5 days.  I can’t wait to get back on Sunday and see Lucas and Krista and hear about their adventures in the warm spring of Washington DC (quite a contrast to Seattle, where clouds, rain, and highs in the 50s have greeted me – Krista’s not going to be happy about that part of the potential move report…)

It’s been 80 degrees outside the last few days and Lucas is certainly enjoying the warm weather. Yesterday Krista made a little video that includes a noisy Lucas, and the blossoms:

You may have noticed that we’ve started tagging our posts so that it’s easier to navigate them. In the 20 months since Lucas was born we’ve posted 223 times (!) and so it’s gotten a little complicated to search through those old posts. With the new system, if you want to learn more about homemade blended formula (for example), you can click on “feeding” on the sidebar and scroll through the various posts. We also have a new category for “pics & video” which this particular post will be included in.

While we’re talking multimedia, we recently put some of our favorite pictures from the last six months together on Flickr – check out the slideshow here:

On Monday we had a major medical adventure: a six-hour long trip to Children’s Medical Center for a supposedly routine MRI.  It turns out that, despite Lucas’s severe muscle weakness, he can in fact move his head when he’s trapped inside a tube with his arms buckled to his sides and horribly loud siren sounds going off all around him!

Having never experienced an MRI ourselves we assumed it wouldn’t be that different that the multiple CT scans that Lucas has undergone over the past 20 months.  And unfortunately no one really prepared us in the weeks leading up to the MRI.  We asked to not have Lucas sedated, explaining that he doesn’t move much and that he’s never had to be sedated for other such scans.  But none of the nurses responded that a brain MRI takes 45 minutes and that Lucas would get strapped down with his head locked in the middle, staring straight up.  Had we known this we probably would have thought twice about sedation.

For starters, we had to change Lucas’s trach tube since there are bits of metal in his usual Bivona trach (the Shiley we switched him to is all plastic and thus wouldn’t be effected by the powerful MRI magnets).   Then we waited for a couple hours for who knows what, and then finally they started wrapping Lucas up in this crazy contraption.  We found out then that his head would have to be held mid-line, facing straight up to the ceiling, his least favorite position.  Even before Lucas was rolled into the MRI room the tears were already flowing.

The trip into the MRI room was shaky because they had to switch him to the MRI-safe vent and didn’t have the proper respiratory equipment to make the transfer.  Meanwhile, we had been told that he could listen to music but instead they stuck giant plugs on top of Lucas’s ears, eliminating that possibility.  Still, we got settled and gave him a final suction before sending him into the abyss, with Krista standing by the machine to hold the end of his foot, which was popping out of the machine.  Then five minutes into the lengthy procedure, with Lucas’s heart rate spiking and the two of us becoming increasingly traumatized, we realized that his head was in fact moving and made the call to take Lucas out and bring in the anesthesiologist.

Ultimately we figured out that they had been unprepared for Lucas, with his trach and vent, as apparently no one had really reviewed his file and made a call about what would be needed.  It’s a complicated situation that gets us thinking about responsibility with a medically fragile child: should we have made more calls in advance of the appointment, should the complex care doctor have done more to prepare us and the radiology department, or should the hospital bureaucracy be more on top of things as it relates to kids like Lucas?  At any rate, by the time it was all over and Lucas was awake and ready to roll, we were four hours late to see the neurosurgeon, meaning that we had to reschedule that appointment for another time weeks down the line.

So after all that we won’t get an official read on the MRI results for some time.  We did hear from one doctor that the results could show a slight increase in the size of his ventricles (you may recall that this was a big issue back when Lucas’s hydrocephalus – or excess fluid in the brain – nearly led to him getting a shunt) but that it’s probably nothing to worry about.

In more positive news, we had a new nurse come for the first time in a few weeks today.  Her name is “Tope” and she seems to be very diligent and determined to figure out Lucas’s sometimes complicated schedule.  There’s less than 2 weeks until Victor returns, but with Burke heading off to Seattle next week it’s nice to get someone else ready to help out.  We want to thank all our friends for stepping up during the two weeks in which we didn’t have a second nurse.  Various people stopped by for a few hours to play with Lucas while whichever one of us was around got some work done in the adjacent room, and it was a big help.  While “babysitting” usually implies parents leaving the house, these hours that we were able to consentrate on other things while Lucas was happily entertained felt like real babysitting to us!

Lucas had a great week last week, relishing the fun and power of his increasing vocabulary. His favorite sign has become the one for “all done” which he uses all the time, often times when he’s upset about something or sick of a game.  In effect, the sign is Lucas’s way of saying “no” and he’s perfected it just as he’s become more opinionated about things (or maybe he’s been opinionated for a while and just hasn’t had the tools to express himself).  The “all done” sign involves holding his hand up with fingers spread and moving it from side to side.  But Lucas doesn’t just use “all done” when he’s pissed – he also employs it when he’s in a good mood, at which times it’s followed immediately by the sign for “more.”  Anytime Lucas likes something – swinging, blowing kisses, singing, looking at himself in the mirror – he gives an “all done” at the peak of enjoyment, meaning someone needs to stop the swing, or the kisses, or the song, or pull the mirror away.  And then, as soon as we’ve stopped whatever it was that we were doing, he brings his mini-fist up and shakes it emphatically to make the “more” sign at which point the action resumes. When he’s really motivated he’ll even heave up the second hand and bring his hands together to make the full, official two-handed “more” sign as he beams with pride.

Our friends Daniella, Gabe and Rafi visited from New York last Monday.  It was a summer-like afternoon, so we sat out on the lawn for hours and grilled up gardenburgers (and shared our second batch of delicious sauerkraut.)  Rafi is about to turn one and like most kids his age he’s full of exuberant energy almost all the time. Unfortunately, Lucas does not identify with a small kid who is constantly in motion, so he gave Rafi the not-so-happy “all done”sign almost immediately when he came in the door. Fortunately Gabe indulged Lucas in an epic game of “all-done/more” while swinging in his chair, and after that Lucas seemed to lighten up and act at least a little more open to Rafi.

Daniella mentioned that kids at this age are learning an average of one new word every two hours, and Lucas seems right on track. Just in the last week he’s learned signs or hand motions for nearly a dozen new things, and he constantly surprises us with words he understands. Along with “all done” his favorite gestures right now are the two-handed sign for “more”, his modified sign for “dance” (the index finger bobbing up and down) and “two fingers” – touching his index fingers together with pride, something that, as far as we know, has no meaning other than “aren’t my fingers cool?”

"I guess Rafi isn't such a bad guy after all"

Yesterday we decided to take Lucas down to the White House for his first ever political demonstration (note: this is a long post – scroll to the end if you just want to see pictures).  In the past, we’ve lamented that Lucas’s disability and medically fragile state has prevented us from being present as a family at marches and rallies, which is sad because getting out to a good protest is something we love to do.  But since Lucas has gotten stronger and we’ve become more confident in traveling around with him, the time seemed right to break through the protest-barrier.

They were two other reasons that this seemed like a perfect first march for Lucas.  First, the weather was great – warm but not too warm, with clouds in the sky but no chance of rain (Lucas can’t handle the bright sun and doesn’t much care for his sunglasses either).  Second, some of our friends have been working for the last week to build festive, giant puppets to parade through the streets of downtown DC.  This was not going to be your typical somber anti-war protest but rather a celebration of “disarm-ageddon”, complete with creative “art-tillery”, puppetistas, a festive marching band, and plenty more colorful props.

We assumed that bringing Lucas along for the entire march (from Dupont Circle to Lafayette  Park) would be a bit much so we parked within a couple blocks of the White House and then walked back towards the approaching crowd.  Once we saw them coming we perched ourselves on a street corner and got Lucas ready to raise a revolutionary fist.  Everyone was overjoyed to see him – some friends on stilts approached, dressed up as the “four horses of the Apocalypse” (see photos) and waived, while another friend with a horn came over and honked in front of us.  Lucas seemed calm (if a little overwhelmed by it all), so after the bulk of the march passed by we decided to jump in and join some more friends who were pulling up the rear.

And that’s when he lost it.  Maybe the noise of the band and the chants became too much, but all of a sudden Lucas got an extremely angry look on his face, and then he just stopped breathing.  He was connected to his pulse-oximeter but it was too loud to hear the alarm, and besides we can usually tell that he’s losing color well in advance of the machine starting to beep.  With his lips started turning blue we quickly got over to the side of the street, pulled out his resuscitation bag, and gave Lucas some manual breaths as the march had moved ahead.  In the midst of it all a nice person in an SUV drove up and asked if he should call an ambulance; we laughed nervously and said that everything was under control.

And indeed it was.  One could perhaps accuse us of being irresponsible parents for bringing a ventilator-dependent child to a raucous protest, but we swear that weren’t putting Lucas in any serious danger.  Sure, he was pretty angry with us at the time, but when we laugh with him about this story some day in the future we hope he’ll recognize that we just wanted him to have a diversity of experiences, and that inevitably a “first-time” like this can be a little jarring.  And though the sight of us using a resuscitation bag on the street corner was probably alarming to a lot of people (much more so than the passing of a urine sample – see our previous blog post), it’s a routine that we’re now quite adept at.  In matter of seconds the color was back in Lucas’s face, and a few minutes later we were ready to roll.

Since he seemed to have calmed down we tried once more to merge into the back of the slow-moving march but once we got close to the noise Lucas again got angry and stopped breathing.  So we motioned to our friends that we’d take an alternative route back to the White House and left the hundreds of festive protesters behind.

Ultimately we found a spot in Lafayette Park about 50 feet from where people were streaming in and sat back to cheer them on.  We got to say hi to Christie and Oz, frequent blog followers who live in Boston and who have therefore never met Lucas, as well as hang out and take pictures with Franny (who accompanied us when we split off).  We tried to explain to Lucas why we were protesting the government on this particular occasion – it involved cutting off funding for the “School of the Americas” plus other US-sponsored military ventures in Latin America – but he didn’t seem to interested.  In the end, we lowered his chair down and just let him chill amongst the blooming tulips; that was about as content as we saw Lucas all afternoon.  Until we got home and he was as happy as can be…

Lucas’s health has been great lately, so we were a little surprised on Friday when there was a pink tinge in his wet diaper. We called the doctor, but then it went away. We weren’t too worried about it (maybe Lucas was preempting our plan to cook him beets), but since we were in the pediatrician’s office Monday for Lucas’s monthly RSV vaccine shot, we asked if they could run a urinalysis. After much back and forth we convinced the nurse that we knew how to handle a urine sample, so let us take the cup and bag home and to gather the sample there rather than waiting hours at the doctors office for Lucas to pee.

Fast forward to yesterday morning. We kept the sample refrigerated overnight, then double-zip-lock-bagged the cup, threw in some ice, and took it downtown on our bikes as we had an appointment. When we were ready to part ways — Krista heading home to check on Lucas and his new nurse, Burke ready to run the sample over to the doctors — we remembered Krista had the sample in her bag. So, without thinking twice, we pulled over onto the busy sidewalk and Krista grabbed the sample out of her bag. The ice had melted, and we initially thought the sample had leaked. But when we were sure the green lid was screwed tight on the clear cup we opened the bags, pulled out the cup, and dumped the water out on the sidewalk. It was only as Burke resealed the bags and stuck the urine in his backpack that we noticed the semi-horrified bystanders. Is passing cups of urine between backpacks not standard protocol for all parents?

In other news…. we miss Victor!  (And, we continue to appreciate Florence!)  We don’t spend enough time on our blog talking about how great they are to Lucas, and at times we probably take them for granted.  But our experience with the nurse who was sent to fill in for Victor was a reminder of how lucky we are to have two nurses who are so good to Lucas.  The fill-in nurse was nice enough, but she had very little experience with trachs and didn’t seem all that interested in learning. So when we noticed her not responding multiple times when Lucas’s pulse-oxometer alarmed (meaning that he was having trouble breathing), we decided to end things. It’s feels horrible to tell the nursing agency that she should not return to our home, especially after a week of getting to know each other and trying to trust her with Lucas’s well-being. But ultimately, Lucas’s safety comes first, so it wasn’t a hard decision.

"If my nurse won't help me breathe I'll just do it myself"

As we’ve wrestled with clear criteria for Lucas’s nurses, we realize that we may be a bit picky, but considering Lucas is a medically fragile child, the fact is that leaving him with an untrained person could be life-threatening.  We’ve tried to indicate to the nursing company the type of qualities that are necessary to do a good job of taking care of Lucas – having experience with Lucas’s category of medical needs being at the top of the list – but it hasn’t done us much good.  Most of the nurses, aside from Victor and Florence, who’ve come to take care of Lucas over the last year and a half have been very much unprepared for the job.

Ultimately, don’t all kids deserve smart, loving, quick-thinking, adoring, encouraging, knowledgeable, well-trained, big-hearted caregivers?  And given that impressive list, how is it that the people in the child-caring profession – not just in-home nurses, but also teachers, aids, nannies, and daycare providers – are so underpaid?  Do we think kids should be warehoused, taken care of and educated by who ever will take the lowest salary?  The nurses who take care of Lucas don’t make very good wages, work insecure hours, and often times don’t get any benefits.  Maybe someone should remind their bosses that they’re taking care of a special needs child with a tracheostomy and a ventilator!

One of the big problems, of course, is that the nursing companies charge high rates – supposedly to pay for the overhead of liability insurance – and then pay the nurses less than half of what the insurance company gets billed.  In the end, it’s the health care system that’s broken… or better yet, our entire economic system.  We don’t mean to subject Lucas’s readers to rants like this but we can’t help but be a little frustrated by the situation itself and the social realities at it’s heart.  We want so much for Lucas’s caregivers to be treated with the respect they deserve – or get the training they need – and thus its hard to be reminded how much is out of our immediate control.