Lucas Camilo

It’s day 5 for little Lucas Camilo and its been a tough ride so far.  We haven’t had a chance to respond to a lot of friends and family because of the emotional rollercoaster we’ve been on since Lucas came into the world on Monday morning.  We are lucky to be now living on Irving street, the same street the Washington Hospital Center is on, so we’re a short drive away and have been hanging out a lot with Lucas since Krista was discharged from the hospital on Wednesday.  Burke’s family flew in from Seattle on Thursday and they’ve been helping us out a lot too.

Lucas is still very sick and hasn’t been getting better as fast as we’d all hoped.  The doctor’s still don’t know exactly what’s wrong but the original diagnosis of infection causing the various problems he’s experiencing proved to be wrong.  Over the past few days there’s been a flood of specialists from both the WHC and the Children’s hospital next door visiting Lucas to do tests and observe him: from neurologists to geneticists to cardiologists, and even a hemotologist.  There are lots of little things that just aren’t working right and yet the sum total is something that doctors say they’ve never seen before in a baby.  But they’re working overtime to figure it out and we’re greatful for the thoughtful neonatologists who speak with us each day, as well as the amazing nurses taking care of Lucas around the clock.

Today the doctors seem to be moving towards a diagnosis.  Though they still can’t be sure, one possibility is that Lucas is suffering from some sort of neuro-musculor disorder, which is effecting his ability to suck and swallow, and making his body movements very limited.  It’s hard to stomach such a thing right now, but among the possibilities that we’d been told about this is far from the most challenging.  If it is neuro-muscular there’s a variety of  disorders that exist, and we probably won’t know until next week what the diagnosis is since he needs to stabilize more before they can do certain tests.

The beautiful thing is being with Lucas and knowing that he can feel and sense our presence despite all his struggles.  Today his heartbeat started racing after the doctor was checking him out and the nurses got worried, but after Krista put her hand on his back the heart rate quickly slowed down.   The soothing mother’s touch… Whatever happens with Lucas we feel so lucky to be able to interact and share with him, and we’re staying strong, hoping for the best, and feeling all the love and support of our friends and family.

Keep thinking of Lucas and pulling for him.  We’ll keep you posted as things move forward.

-krista and burke