Lucas Camilo

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.