Lucas Camilo

The last week has included lots of ups and downs for Lucas.  While it was wonderful having his grandparents in town – including an enjoyably extended stroll around the neighborhood with Lucas sporting his pink-leopard-skin sunglasses – there have also been some scary moments that  bring us back to a difficult reality: Lucas remains a very medically fragile child.

First, we had an appointment last week with the new pulmonologist that Lucas will be seeing from now on, and it went really well.  We gleaned a lot from a long conversation with the pulmonary doctor and a respiratory therapist, and the showed us how to do “chest PT” to help loosen his secretions. Perhaps all the practicing brought some gunk in Lucas’s lungs up, because as we locked his carseat into place for the return trip he suddenly got a “plug” in his trach.  This situation – where mucous from his throat clogs the small opening in the trach tube – has happened before, but never in a parking lot.  As the alarm continued to sound on the oxygen saturation monitor we realized that we were going to have to do an emergency trach change.  As Lucas struggled to breath, Krista got ready with the extra trach that we always carry with us and Burke proceeded to extract the other one from his trachea.  Krista replaced it will the clean one and we pushed air into his lungs with the resuscitation or “ambu” bag.  A look of relief came over his face as the percentage number on his monitor climbed back to 100.

We felt good about the fact that we accomplished the trach change in rather precarious circumstances, and figured the episode would be our Lucas excitement for the week.  But then on Friday evening we were at a barbecue with friends when the nurse taking care of Lucas called us and said we needed to hurry back, that Lucas was having problems breathing and may need a trach change.  We jumped on our bikes and raced home, only to find Florence standing relieved over Lucas as he played with his giraffe.  It turns out the situation had been different than our episode in the car, that there hadn’t been a block in his trach but rather that Lucas hadn’t been breathing with enough effort to keep his oxygen-saturation level where it should be.  When suctioning didn’t seem to help and Lucas kept slowly dropping down into the 80s on the monitor (which measure the percent of of oxygen saturation in his blood) Florence decided to call us home.  Then shortly after she did, as we were peddling hard towards home, Lucas returned to normal.

The little guy did fine all through the weekend, and then on Monday morning he had another episode.  This time it was 7 am and we were waking up as Florence watch over Lucas in the back room.  We could hear her voice talking to him calmly, and then heard the alarm from the oxygen monitor followed by the suction machine switching on (not that unusual so far), but then suddenly Florence started to raise her voice and shout at Lucas.  We jumped out of bed and ran to the back room.  Lucas was blue and his oxygen saturation was near 40%, the lowest we’ve ever seen it.  Florence was using the resuscitation bag and he already appeared to be getting some color back.  A minute or two later he was back to normal, making funny faces as if nothing had happened.

What was particularly scary about the last incident was how fast it all happened.  It was similar to the episode back in March that landed him in the ER for the second time in that it appeared that he wasn’t making much effort to breath for a brief period of time.  Then, just as suddenly as it came on, Lucas snaps out of it and goes back to breathing normally.  Fortunately we have the equipment to deal with these situations, but it’s still quite scary.

Ultimately, these things remind on that not only does Lucas have special needs but he is fragile — his very breathing depends on a machine, a digital monitor, and a team of nurses, doctors, and parents who are vigilantly watching over him to make sure he is safe and as healthy as possible.   The funny thing about all the troubles Lucas had this last week is that in between them he seemed as alert and interactive as ever — the big smiles he shared with his grandparents as they played were especially gratifying — and so it didn’t necessarily represent a step back in his overall progress.  Still, we know that there will be more scary episodes ahead; at times it will be exhausting for us, and surely for Lucas too.