Lucas Camilo

The long-awaited family meeting finally happened at the end of this last week. (Actually, it ended up being 3 separate meetings: first with the neonatologist, then with the neurologist, then the geneticist.) The idea of the “family meeting” is that we hear an update on the big-picture status of our baby and then get to ask all the doctors following his case the burning questions we have. For those that have been following Lucas closely, you’ll notice that most of this information is nothing new, but it was still good to have these conversations.

The neonatolgist who’s been looking after Lucas since the beginning of September decided to sit us down on Thursday since he’s not a fan of the big, intimidating family meeting structure. He’s a thoughtful, young doctor (he and his wife just had their first baby two days before Lucas was born) and we trust his perspective and advice. He explained in detail the very extensive “work up” (series of tests to check for infections and disorders) Lucas had been through, and the fact that he presented normal in all cases, pending a few tests that will also likely end up being negative. The conclusion, he said, is that we may never have a diagnosis for Lucas. For doctors this is a hard reality, because a big part of their job is being able to diagnose what’s wrong. For us at this point it’s ok, since what they’re testing for (mostly metobolic disorders) are usually so devastating that the prognosis for Lucas would be grim.

As 2:oo pm on Friday rolled around – the actual time of the family meeting – only our favorite neurologist was around in the halls of the NICU, so we decided to sit down with her alone to get more of her thoughts about what was going on with Lucas’s brain. Short a diagnosis, the primary factor ailing Lucas is the major bleed in his brain that happened around the time of his birth. We still don’t know why it happened, but the fact that he’s getting better shows that brain injury – and not a central nervous system disorder – is likely the cause of his low muscle tone, and of his struggles to breath. The neurologists are impressed with his continued movement and increasing strength, but they also warn that he’s recovering slowly and that it probably will take months for him to have the strength to fully develop the important skills babies need to survive without tubes sticking in them: most importantly, breathing and feeding. Therefore, they recommend as a possibility that Lucas get surgery to open a direct airway in his windpipe (called a tracheostomy) so that he can come home with us in the next month and be able to breath without the ET tube going down his throat. We had a lot of questions about this recommendation, but we’ll leave that for another post since for now we feel confident that Lucas deserves another shot at breathing on his own before considering other possibilities.

The neurologist also told us that they’ll wait a few months to do another MRI to assess Lucas’s brain structure and functioning. In the meantime, she confirmed what we have heard from the physical therapist, which is that there is much that we can do to help stimulate his continued development, both in terms of strength and flexibility of muscles, and in terms of cognitive functions. You’ll all be happy to hear that playing him music (and singing along) is a very good thing, so keep those baby CDs coming!

Finally, we sat down with the geneticist about 2 hours after the set meeting time. He presented us with the results of the “microarray” test, one of the last tests that had been pending. The microarray essentially scans all of the chromosomes up close to see if there is anything missing, or extraneous, on any one chromosome. Once again, Lucas came up normal (he had a small gain on one chromosome, but the geneticist told us that it’s clinically insignificant). There’s one metabolic test still pending, he said, but it’s unlikely that it will come back positive. However, the geneticists still haven’t closed the book on Lucas, and they’ll continue observing him occasionally in the coming months.

Lucas gets a bath from mom

So that’s the report. Lucas is still a mystery to the doctors, but he’s becoming less so to us. Whatever happened to him is proving tough to recover from, but he IS recovering. He’s doing it on his own time, and as he does, we’ll continue to sit close to him, help develop and flex his muscles, stimulate his brain with bright colored stuffed animals every time he opens his eyes, and rock out to his favorite tunes. We’ll talk to him, touch him, and hold him, every day that we can.

(PS: Lucas says “happy birthday grandma!” aka Nonna who arrives for a visit today)