Lucas Camilo

On Sunday we took Lucas to see some scruffy, fantastic vaudville-esque circus performers in Volunteer Park.  They held his attention for hours, and he was especially into the jugglers.

The next day he woke up with a little cold, but it didn’t seem like anything serious, so we stuck with his regular full schedule of speech therapy, walks, etc.

So we were surprised on Tuesday morning when Lucas woke up having trouble breathing, even after we’d gone through all our usual tricks (suctioning, patting his chest, moving him around, suctioning some more).  He started looking grey and was flaring his ribs as he sucked for air, so we pulled out the oxygen tanks we keep around for emergencies.  And when even that didn’t work, we packed up a pale Lucas and hurried in to the emergency room.The short story is that he has rhinovirus (the common cold).  There’s nothing to do except rest, hydrate, and use a machine called the “cough assist.”  It manually forces air in, then creates a vacuum so his lungs make a coughing action and bring the mucous up and out — an action that Lucas’ muscles aren’t strong enough to do on their own.

It didn’t take long in the ER to figure all that out, but the docs insisted on keeping him at the hospital for a night just in case things got worse.We felt bad (and the docs helped reinforce this) that we forgot to try using our cough assist machine at home.  But Lucas has never had anything like this before, so when we’ve used the machine in the past, it didn’t do much.  So it didn’t occur to us in a time of urgency to use a machine that’s never really worked for Lucas.  Turns out he just didn’t have the right kind of cold to make it useful before.

It’s pretty near amazing that Lucas has made it almost four years without this problem of a common cold with mucus deep in his lungs.  But that knowledge felt like little consolation as we tried to sleep in the ICU Tuesday night with nurses, residents, fellows, respiratory therapists, and the cleaning staff coming in just about every hour all night long.  Our nurse had assured us that they’d let him sleep — hate to see what they do to the kids who they aren’t “letting sleep.”
Lucas thought the hospital was pretty great.  He had a big screen TV, and lots of people coming in and out who he could chat with.  He especially hit it off with the respiratory therapists (RTs).  While we were out of the room he tried to convince one RT to read him his favorite book.  When we came back and explained what he was requesting, she sat down and read him all of Hiccup Hippo.

While Lucas is doing fine — home and in great spirits, though he’s still recovering — the two of us are worn out from the whole thing.  Tuesday morning was stressful, not just because it was hard to see Lucas in distress, but also because we’re used to being a smooth parent/medical-caregiver machine that can deal with whatever he needs.  But on Tuesday morning we read his signs differently.  And then going in to the hospital is generally awful because although we know what he needs or wants at least 97 per cent of the time, hospital procedures require us to either relinquish most of our power to care for him, or else stay extremely alert and able to argue and advocate for him at every single step of the way.  Each time we go in there are new doctors, so we have to go through some of the same arguments we’ve had before.  They notice the leak in his trach and want to put in a cuffed trach.  We explain that if they do that they take away his ability to talk, and besides, he does fine with the leak.  They say they could ventilate him better.  We say he’s been healthy and well ventilated for four years with a leak, and we like to hear his voice.  They think they know better than us.  We think we know better than them.  And so, while we’re on our last half-nerve, having started our morning at 5:30 am with Lucas in distress, we’re forced to either back down and let them do what they think is best (with the trach or a dozen other procedures) or stand our ground and try to appear reasonable, articulate, and informed so that we can convince the doctors to do what we are sure is best for Lucas.

It’s not all a stand-off, but it sometimes feels that way.  Especially when we’re not just negotiating with one doctor, but up to four or five at a time.  At one point we had an attending pulmonlogist, a pulm fellow, a pulm resident, and an attending ICU doctor all pretending to have a conversation with us about what was best for Lucas (in this case, whether or not he needed to be in the ICU), when it was clear that we were negotiating with people who were not going to change their position.  The negotiations ended already because we got concessions — they agreed we could discharge directly from the ICU (meaning a faster path to home) and that we could do most of his care in the ICU (though they pointed out that they didn’t really have say over many things that were just hospital procedure.)

Lucas came home Wednesday morning and of course we’re thrilled to have him home.  However, Friday morning we went back for a chest x-ray and our pulmonologist says things are looking worse than two days prior.  This is likely just the normal trajectory of the virus — getting worse before going away.  And today he’s in such good spirits, and with much less need for the cough assist, that we might just take him to a party this afternoon.