Lucas Camilo

Lucas has been stable since getting out of the hospital last Wednesday.  But we’d be lying if we said being home has been happy and easy.  In fact, we’re still recovering from the trauma of Lucas’s emergency hospitalization, with residual fears about what could happen at any moment.  We’ve taken some extra precautions, and decided we weren’t quite ready to send him back to school.  His respiratory health has been fine and there haven’t been any other scares since he’s been home.  Given the likelihood that the episode was the result of an accident and not a change in his overall health it would seem that what’s most important is to make sure there’s always someone with Lucas who can respond to an emergency.  And yet all of us – parents, grandparents, caregivers, doctors, etc – are just a little more on edge for now.

On Sunday and Monday Lucas seemed to take a few steps back in his recovery.   He was really lethargic, and cognitively a couple steps slower than even the previous few days.  He was having more trouble forming words, and the few he did say were slurred.   He seemed to still enjoy most of his favorite routines, but it was taking him longer to remember and respond, and he didn’t have the coordination to do most of his apps on the iPad.   Perhaps most unnerving was his passivity — he didn’t make requests or say “no” to anything.  His nurse Lauren wasn’t quite sure what to do with him Monday morning when Lucas didn’t immediately start demanding books, videos, apps, flash cards, etc.

The idea that Lucas may have been injured in a way that could pose more long-term challenges feels absolutely unfair – borderline cruel of the universe to throw THIS at a kid who already had so many significant challenges moving and being in the world.  We’ve tried to be patient with this recovery, but at times sitting and waiting has been like marinating in a messy stew of fear, sadness, anticipation, and worry, mixed up with love and hope and appreciation.  Throw in a half cup of exhaustion, and you have a couple of glassy-eyed parents.

For better or for worse, any time we get too caught in the details of worrying about recovery we can zoom out and remember how happy we are that he’s simply alive, responsive, aware, active.  Given what he went through the fact that he’s functioning at all is good news.  Many doctors have said that they expect him to fully recover, especially since he bounced back so quick in the days following the accident.  It just may take some time, they say.  So we’ve been riding this emotional yo-yo, going back and forth between rejoicing in the simple fact that Lucas is alive, then feeling worried and impatient to know whether we’ll get our Lucas back exactly the way he was before.  Of course, we’re going to love Lucas like the amazing kid that he is, no matter how “full” his recovery, no matter how long it takes.  Our life with Lucas never was normal to begin with and we’re prepared for it to be even less normal.

Such was our attitude yesterday afternoon when he suddenly perked up and started saying more words, not to mention counting in multiple languages (albeit slower than before) and asking for his phonics flashcards.  Then this morning at his doctor’s office he was demanding repeat readings of various animal books.  We laughed and breathed a little easier.

Now we’re feeling a little sheepish about how anxious we were a couple days ago and trying to remind ourselves that it’s only been a little more than a week and that recovery will take some time.  It’s like a mantra.  Meanwhile, we’re consulting various doctors, families, and other healers about what can be done to help his recovery, and doing some research on our own.  We’re pretty sure that they’re all going to say that we just have to wait… but even so, we’re finding ways to give Lucas some extra support.  Yesterday afternoon – right around when he perked up – Lucas had an appointment with a craniosacral therapist and he’s got an acupuncture appointment scheduled too.  We’ve also made some minor adjustments in his diet.  Any other healing advice folks have would be much appreciated!

We joke about some “positive” changes too, like the way Lucas has been a lot more agreeable and amenable to things since the accident.  He’s even enjoying snuggling in Krista’s arms – something he hasn’t done for more than a minute or two since he was a year old.  So while the getting is good Krista has been cuddling up with Lucas on the couch, in bed, at the doctor’s office… wherever he’ll go for it.  The docs say he needs lots of rest, and what’s more restful than lying in mommy’s arms?

First off, we’re happy to report that Lucas enjoyed his first full day home from the hospital.  He got to spend time with lots of family – Gramma Susan, Aunt Megan, Papa, Aunt Ashley and Uncle Brandon, Nonna, Madden, Tya, and Ellody.  He even got to enjoy some of Burke’s special homemade tofurkey (which critics are calling his best ever) mixed up and consumed though his g-tube before going to bed.  Though Lucas still isn’t quite back to his old self he’s making slow progress and we feel confident that he’ll continue to recover.

Now that Lucas is home safe and the dust has settled we wanted to write a little more about how Lucas ended up in the hospital last Saturday.  It’s not an easy thing to do but a lot of people have asked and it’s helpful for us to share some of the experiences, as part of our own learning as well as education for our community about Lucas’s challenges.

On Saturday afternoon both of us were gone and Lucas was spending time with a relatively new nurse, as well as Gramma Susan.  We don’t know exactly what happened but we believe that an adjustment of Lucas’s position caused his airway – i.e. tracheostomy tube – to became clogged.  The nurse tried to suction and then use the resuscitation bag to force air into his lungs but he continued to look blue.  This has happened to us numerous time before and the next step is to change the trach tube since there is likely to be some mucus blocking the passage of air.  A fresh trach tube then allows Lucas to breath again, solving the problem 9 times out of 10.  Again, we don’t know for sure that this was the issue, but we do know that the nurse failed to change the trach.  Instead, Krista’s mom called 911 and mayhem ensued.

Burke’s mom pulled up to the house right as some firemen and then a Medic One crew arrived and began performing CPR on Lucas.  Krista was at a workshop 20 minutes away and Burke at a board retreat two hours away.  It took some minutes to get a hold of both of us and there wasn’t much we could have done at that point anyway.  Krista raced to Children’s Hospital to wait for Lucas to arrive while Burke left Leavenworth with his friend Eli driving back towards Seattle.   (Eli wrote a blog post about their experience that you can read here.  His reflection perhaps overestimates our strength at the same time as it beautifully describes the vulnerability of being a parent.)

We don’t know how long he was without oxygen or when exactly the trach was changed.  But the paramedics performed chest compressions on Lucas for up to 15 minutes in our house, and eventually his pulse returned.  At that point they loaded him into the ambulance and raced off to Children’s hospital.

Along the way Lucas’s heart slowed again and by the time they arrived (with Krista waiting at the ER) the paramedics were once again performing CPR.  We know that they delivered up to five shots of epinephrine at the house and during the drive to the hospital, as well as multiple intraosseous or IO infusions (injecting fluids directly into the bone marrow since an IV line was not available).  The crew at the Children’s ER continued to do chest compressions – including our friend Whitney who was on duty – and eventually stabilized Lucas again.

At that point the attending doctor inserted a central IV line in Lucas’s leg so that he was able to get fluids once again.  There were some hopeful signs immediately: Lucas’s squirmed and cried in pain during the IV procedure, and blood taken around that time showed a relatively stable PH (implying that he had not been without oxygen for long, which would have caused significant acidosis).

Lucas was transferred to the intensive care unit and when Burke arrived at the hospital an hour or so later he was in a deep sleep.  More initial tests were done with encouraging results, but then came the big puzzler: an ultrasound that showed large formations in both of his kidneys, identified by the urologist on duty as kidney stones.  Meanwhile, the nurse’s effort to remove the foley catheter led to the beginning of extensive bleeding.  Since it was a weekend there were mostly residents on duty and no one could figure out what was going on.

Eventually we learned that the formations were probably not kidney stones but rather sloughing in the lining of the kidneys due to the low-oxygen period.  It remains puzzling, though, because none of the doctors have ever seen such extensive sloughing and blood.  Meanwhile, Lucas’s kidneys are functioning fine and as far as anyone can tell no other vital organs were effected by the episode.  We have a urology/nephrology appointment scheduled in late December that will hopefully shed some light on what happened.

The other unknown at this point is whether there was any damage to Lucas’s brain because of the loss of oxygen.  As we said in the beginning, Lucas is doing really well, though he is struggling to form words and phrases that came easy before the accident.  Only time will tell whether there was any permanent damage – and, perhaps, an MRI.  But given all that he went through and how bad he looked when he pulled up to the hospital on Saturday afternoon, we continue to feel blessed and fortunate for Lucas’s health.  And the simple fact that he is alive.

After almost exactly four days at Children’s Hospital, Lucas is home.  Ten minutes after our arrival we went back outside to get some bags from the car and there was a perfect rainbow in the sky to the north.  A good omen indeed.

Right now we’re somewhat astounded by our good fortune.  Given all that Lucas went through on Saturday and Sunday, and where things stood yesterday morning, it’s downright miraculous that we got discharged today.  Lucas started smiling the second we rolled up his wheelchair and went to pick him up from the hospital bed, and he pretty much kept smiling the entire ride home.

As Burke was driving last night to pick up Lucas’s gear he heard a show on the local NPR station featuring the “interfaith three amigos.”  They were talking about the concept of gratitude and this is what the Rabbi had to say:

“Most of the time ‘thank you’ is almost perfunctory, and sometimes heartfelt, but it is a response to something that happens in the moment.  Gratitude is a bigger category that represents the expression of an open heart, where we become grateful not only for a particular event but for being present at a particular time, for being with the people we are with, and being able to perceive the beauty and the goodness in our world.”

So for now we won’t go down the list and thank all the people who’ve done amazing things and sent love for Lucas and for us over the last four days.   What’s most important is that Lucas is alive, and smiling, and asking for books, and dancing in our arms to “Mister Rabbit”, and lighting up the world with beauty and goodness in the way that he’s been know to do.  Indeed, we are feeling grateful.

This afternoon things just kept getting better.  Around midday Lucas started smiling, and by the time we pulled out the funny hospital implements for a bath in bed Lucas was being a total ham.  After his nap he kept on laughing and playing.

His voice is coming back little by little, and though we still can’t understand most of what he’s saying, we definitely heard a request to “get in the van,” “go outside,” and “go to the new house.”  Our sentiments exactly.

Around the same time the bleeding slowed significantly, so by early evening the docs said both his extra tubes — the catheter to his bladder and the central IV line — could come out!

All this is so much better than we dared hope for this morning, so we wanted to share it before we crash for another evening on the pull-out couch.

Lucas finally got a good night’s sleep and as a result, so did we (or as good as it can be when you’re sleeping on a fold-out bench in a shared hospital room).  There is other good news as well.

Lucas received a blood transfusion yesterday because his hematocrit levels were low – which is to say that he had lost a lot of blood due to still unexplained issues with his kidneys and bladder (more on that later).  The transfusion was successful and helped to immediately bring down his racing heart rate.  He had been pale and the transfusion also brought his color back.  A test this morning showed that his red blood cells are getting back towards normal levels.

After a battle with the nutritionist resident on Sunday (which we eventually won when the regular nutritionist returned Monday morning), Lucas started getting his homemade, blended, whole-food formula yesterday and is digesting it well.  His bodily functions are mostly back to normal, and last night we replaced the hospital standard trach tube (which has a cuff) with the one he usually uses, and he immediately started using his voice more.

Best of all, after making a run to our house in the evening Burke brought back some more of Lucas’s favorite books and we got some big smiles as we read “The Grouchy Ladybug” late into the night.  Earlier in the day Lucas’s cousin Madden brought him some little dinosaurs which he’s been enjoying, especially “Spikes” the multi-colored glow-in-the-dark Triceratops.

There are some difficult things too.  The aforementioned bladder and kidney issues may end up not being as bad as we previously thought, but they nevertheless continue to cause bleeding.  The urine-blood mix coming from the catheter looks a lot more like watered down Cool-Aid than cranberry juice today, which is a good sign.  Yesterday’s ultrasound showed that there is a significant blood clot in his bladder, therefore the direct source of the blood.  But why it’s there remains a bit of a mystery, one that should be solved today.  It’s looking less likely that Lucas has the giant kidney stones that were originally identified; rather, the urologists believe that there may have been some “sloughing” of the tissue in his kidneys due to the low levels of oxygen in his blood on Saturday.  That, in turn, could have led to ultrasound images that looked like kidney stones, as well as bleeding into the bladder.

The biggest challenge for us right now is that Lucas is not back to his old self.  He’s a little bit more awake and aware today than he was yesterday but is only able to form the occasional word.  He makes some sounds when he’s animated and has said a few words clearly – as reported previously – but he’s not able to communicate in his usual way.  His hand movements also remain very shaky.  He’s only able to really grab and hold tiny things, and when he reaches out it’s hard to tell what he’s trying to do.  We’re so used to being able to communicate with Lucas and know exactly what he wants, and right now it’s very difficult.

Today we’ll talk more to the doctors about the potential trajectory of his recovery.  It may be that it just takes time, like someone who has had a stroke.  We know that kids’ brains are very elastic so if there is any damage from the lack of oxygen his brain will do well to mend and adapt.  At some point soon they’ll likely do an MRI that will give more indication of potential damage.  It’s scary to think about but we’re still very hopeful.  For now, we ask you all to keep Lucas in your thoughts, and thank everyone again for your love and support.

Being in the hospital is familiar in all sorts of unfortunate ways, bringing us back to the first months of Lucas’s life where we got to know the routine of having a sick child all too well.  We’re on an emotional roller coaster again — feeling optimistic, even joyous and extremely grateful one hour, then something happens and within a blink of an eye the fear returns.

Lucas’s ten minutes of slurred talking and questions last night had us happy for hours.  But then in the middle of the night he woke up in pain.  He was asking for something that we couldn’t understand, his hands were searching the air and trembling, and his heart rate spiked to 180 – twice his resting heart rate, and a clear sign of distress.  So we took turns sitting up, trying to soothe him while puzzling through all the variables with the nurse to try to figure out what was going on.

Besides the general trauma of having been oxygen deprived and then having chest compressions for half and hour, Lucas also has significant blood coming out in his urine.  The docs in the ER placed a foley catheter and seem to have injured him in the process.  In trying to figure out what went wrong, they did an ultrasound yesterday and found that Lucas may have numerous, large kidney stones.  So part of difficulty of seeing him in pain last night was not knowing if he’s going through a recovery process from the CPR or if we’re diving into something else that could be getting worse.  Or maybe both at once.  Later we learned that ultrasound images likely do not show kidney stones but something related to the traumatic incident.

At any rate, around 4 am they finally gave Lucas some more significant pain medication.  He eventually stopped moaning and wiggling in pain, though his heart rate didn’t go down very far.   But while he was a little more peaceful the two of us got a couple hours of sleep.

This morning we’re pretty tired and feeling far removed from yesterday evening’s joy and optimism.  Of course it will come again, and then go or change into something else.  It’s been really comforting to know so many of you are with us, even from afar, so thank you for your thoughts, messages, and prayers.

Lucas remains groggy and continues to mostly sleep but this afternoon he finally opened his eyes a couple of times.  He also started sucking his thumb (after turning it down last night and earlier today) and massaging his familiar wash rag.  These are all good signs, but the best happened an hour ago when he was moved down to to “the floor” because he was stable enough to leave the ICU.  His eyes opened wide with the bright light of his new room and he said “Mommy!” and “Daddy!” and then “What’s that?” pointing at the hospital chair across from his bed.   Everyone in the room cheered.  Ten minutes later he was asleep again but we felt assured that our Lucas was coming back.

Right now we’re relieved, tired, and grateful for the support of all our family and friends.  We’ve had lots of people stopping by and bringing food and provisions all day, calling and texting support, and offering to do whatever they can to help.

Meanwhile, we’re trying not to re-play the events of yesterday too many times in our minds.  We know what happened is not our fault but we’re devastated by the idea that had either of us been there this would not have happened.  The truth is we don’t know exactly what went down and probably never will, and it’s not worth it to try to assign blame.  The amount of time he was without oxygen appears to have been shorter than we originally thought.  And we learned that his heart never actually arrested, though it did slow down significantly on multiple occasions.  In the end no kid should have to go through what Lucas has been through over the past 24 hours.  But he’s a trooper.

Lucas was admitted to the hospital yesterday. There was an incident while both of us were out of the house and Lucas was at home with a nurse. He suddenly stopped breathing, and she wasn’t able to get air into his lungs.  Krista’s mom was there and called the paramedics, and they arrived, performed CPR and eventually took him to the emergency room.  He stabilized, but the incident clearly took a toll on his body.

Please hold him in your thoughts and prayers today.  We think it is likely he will fully recover, but for now we have only seen him moan and wiggle his fingers slightly.  Needless to say, it’s been a hard and scary night for us.  It also made us realize once again how deeply we love Lucas and feel lucky to have him in our life.