Lucas Camilo

Lucas’s health has been great lately, so we were a little surprised on Friday when there was a pink tinge in his wet diaper. We called the doctor, but then it went away. We weren’t too worried about it (maybe Lucas was preempting our plan to cook him beets), but since we were in the pediatrician’s office Monday for Lucas’s monthly RSV vaccine shot, we asked if they could run a urinalysis. After much back and forth we convinced the nurse that we knew how to handle a urine sample, so let us take the cup and bag home and to gather the sample there rather than waiting hours at the doctors office for Lucas to pee.

Fast forward to yesterday morning. We kept the sample refrigerated overnight, then double-zip-lock-bagged the cup, threw in some ice, and took it downtown on our bikes as we had an appointment. When we were ready to part ways — Krista heading home to check on Lucas and his new nurse, Burke ready to run the sample over to the doctors — we remembered Krista had the sample in her bag. So, without thinking twice, we pulled over onto the busy sidewalk and Krista grabbed the sample out of her bag. The ice had melted, and we initially thought the sample had leaked. But when we were sure the green lid was screwed tight on the clear cup we opened the bags, pulled out the cup, and dumped the water out on the sidewalk. It was only as Burke resealed the bags and stuck the urine in his backpack that we noticed the semi-horrified bystanders. Is passing cups of urine between backpacks not standard protocol for all parents?

In other news…. we miss Victor!  (And, we continue to appreciate Florence!)  We don’t spend enough time on our blog talking about how great they are to Lucas, and at times we probably take them for granted.  But our experience with the nurse who was sent to fill in for Victor was a reminder of how lucky we are to have two nurses who are so good to Lucas.  The fill-in nurse was nice enough, but she had very little experience with trachs and didn’t seem all that interested in learning. So when we noticed her not responding multiple times when Lucas’s pulse-oxometer alarmed (meaning that he was having trouble breathing), we decided to end things. It’s feels horrible to tell the nursing agency that she should not return to our home, especially after a week of getting to know each other and trying to trust her with Lucas’s well-being. But ultimately, Lucas’s safety comes first, so it wasn’t a hard decision.

"If my nurse won't help me breathe I'll just do it myself"

As we’ve wrestled with clear criteria for Lucas’s nurses, we realize that we may be a bit picky, but considering Lucas is a medically fragile child, the fact is that leaving him with an untrained person could be life-threatening.  We’ve tried to indicate to the nursing company the type of qualities that are necessary to do a good job of taking care of Lucas – having experience with Lucas’s category of medical needs being at the top of the list – but it hasn’t done us much good.  Most of the nurses, aside from Victor and Florence, who’ve come to take care of Lucas over the last year and a half have been very much unprepared for the job.

Ultimately, don’t all kids deserve smart, loving, quick-thinking, adoring, encouraging, knowledgeable, well-trained, big-hearted caregivers?  And given that impressive list, how is it that the people in the child-caring profession – not just in-home nurses, but also teachers, aids, nannies, and daycare providers – are so underpaid?  Do we think kids should be warehoused, taken care of and educated by who ever will take the lowest salary?  The nurses who take care of Lucas don’t make very good wages, work insecure hours, and often times don’t get any benefits.  Maybe someone should remind their bosses that they’re taking care of a special needs child with a tracheostomy and a ventilator!

One of the big problems, of course, is that the nursing companies charge high rates – supposedly to pay for the overhead of liability insurance – and then pay the nurses less than half of what the insurance company gets billed.  In the end, it’s the health care system that’s broken… or better yet, our entire economic system.  We don’t mean to subject Lucas’s readers to rants like this but we can’t help but be a little frustrated by the situation itself and the social realities at it’s heart.  We want so much for Lucas’s caregivers to be treated with the respect they deserve – or get the training they need – and thus its hard to be reminded how much is out of our immediate control.