Lucas Camilo

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.