Lucas Camilo

We came to Children’s on Friday for routine check-ups with the pulmonologist and nephrologist.  Everything looked good, and both doctors basically told us to keep doing what we’re doing and come back in a couple months for another check up.  But as we loaded Lucas into his stroller to head home his breathing changed and the monitor that measures his oxygen saturation started alarming.  It’s not totally strange for his blood oxygen level to drop a little when we put him in his stroller, so at first we just did what we always do and started suctioning his trach and giving him some extra breaths with the resuscitation or “ambu” bag.  But his vitals kept dropping, and it became clear that Lucas was barely taking any breaths.  After a couple of minutes of manually breathing for him we called the nurse and doctor back into the room, and pretty quickly they decided we should take him down to the ER.  We kept giving him breaths while they called in a stretcher and the respiratory therapist, but before they were even ready to wheel him down he woke up and started breathing on his own again.

The whole incident happened so abruptly -it probably lasted 5 or 10 minutes in all – that we didn’t really have time to be scared.  What was tough, then, was seeing Lucas so alert and cheerful as he was stripped down and put in a baby hospital gown, attached to all the hospital monitors, and poked, prodded and scanned all over again.  We spent the night in the ICU on Friday night and did some more tests in the morning that monitor brain and heart activity but everything came back normal, and so by 6 pm on Saturday we were discharged and heading home.

Lucas is doing so well now that we’re hopeful that Friday’s incident was a total fluke.  There are some possibilities that we’ve thought of for why his respiratory effort dropped off, such as the fact that the suction machine in the doctor’s office was turned up high which could have sucked too much air out of his lungs and shocked him.  Another possibility is that he had a seizure, but the EEG test of brain electrical activity show no signs of that.  It’s certainly not the first mysterious, apparently inexplicable thing that’s happened in Lucas’s early life.

A couple other incidents of note happened while we were in the hospital.  The first ended up being rather humorous, though it was initially quite disconcerting.  The short version of the story is that a doctor in the ER insinuated that we were child abusers.  Imagine Krista’s surprise when she came back from the bathroom, saw the doctor leaving and asked what was going on, only to hear Burke say, “it’s all good, except that they think we’re beating Lucas”.  Child abuse is nothing to laugh about, of course, but what had “tipped them off” was a chest x-ray of Lucas that showed potential rib fractures.  We politely told the doctors that thin ribs were a characteristic of Myotubular Myopathy, but the woman who broke the news said that because of concerns about abuse they were going to have to do an entire skeletal scan – a series of close-up bone x-rays – to see if there were any more signs of abuse.  We protested and convinced them to delay the procedure, and later the PICU doctors canceled the order on the skeletal survey, apologized and said that in fact there was a “misreading” of the initial chest x-ray.  Ooops!

The other thing that happened is that we met a respiratory therapist who has a second cousin in New York diagnosed with MTM.  He was born with very similar symptoms as Lucas (he spent his first 9 months of life in the hospital) but is now  two years old and doing really well – moving more, only using the vent at night, and getting out of the house more and more often.  She gave us the contact information of his mom and we’re excited to get in touch.  We’ve calculated that only a couple hundred boys are born a year in the US with MTM (given the 1 in 50,000 rate), so it’s a pretty cool coincidence to randomly meet someone with a relative that has the disease.  One positive upshot to Lucas’s brief visit to the ICU…