Lucas Camilo

This morning Lucas had an appointment at the “equipment clinic” to get fitted for his new chest braces that are supposed to help him sit up straighter.  He didn’t love them, but we’re hoping that as we begin to experiment he’ll come to find the braces more helpful than restricting.

Usually we both go with Lucas to his appointments – in part because we both want to be there to learn and quiz doctors and specialists, and in part because Lucas needs someone sitting with him in the back seat at all times.  But this morning Lucas’s nurse Florence was here, so she and Burke took Lucas to the appointment while Krista stayed home to get other things done.

We haven’t written much here about Lucas’s nurses despite the fact that they are a pretty big part of his life.  Although we still wish we didn’t need nurses to help take care of Lucas, we are grateful to have found two great nurses to spend certain nights, mornings, and afternoons with Lucas.  And, since we’ve gotten to know them pretty well over the past six months, we thought we’d share a little about them on the blog.

Victor started working with Lucas in December, shortly after we came home from the NICU.  Victor grew up in Sierra Leone and came to the US in the 90s.  He originally studied agriculture, but about ten years ago he was in a major car accident.  Through his time in hospitals during the initial recovery and later going through more than a dozen surgeries, Victor says he – like anyone who’s spent a lot of time in a hospital – came to appreciate the job of a good nurse.  So he decided to change paths, go back to school, and he became one.

Victor spends four nights a week with Lucas, and for three of them he stays on until 11 am in the morning.  Often Lucas is still wide awake and happy to see Victor when he arrives at 11 pm, so they play together until Lucas falls asleep.  Luckily for Lucas, Victor is a skilled whistler, so it is not uncommon for us to fall asleep to the sound of Victor whistling and Lucas cooing back his approval.   In the mornings Victor helps us with Lucas’s routine and stays around long enough to do some exercises and play with Lucas.  Of course, Lucas’s morning routine includes our morning routine, so we often end up talking about the news on the radio or in the paper.  Victor swears that he’s not interested in politics, but he’s quick to rant with us – in his big, enthusiastic voice – about the DC mayor’s latest affront to the poor, or about BP oil executives, or about management mistreating workers.  Victor is engaged to be married and, although he doesn’t have a date set, he’s also been explaining to us the different wedding traditions in Sierra Leone and how he and his fiancé are adapting them to their lives in the U.S.  Since we have so much of our lives exposed to our nurses, it’s felt nice to have Victor share some of his stories with us.

Lucas’s other nurse is Florence.  She started working with Lucas in the spring when Burke went back to work full time.  Most of the nurses that do in-home care in Washington DC that we’ve met so far have been from west Africa, but Florence is from Uganda.  She has also been living in the DC area for over 15 years and has worked as a nurse for most of that time.  Florence has two young kids of her own, so besides her skills as a nurse she also has experience (and preferences) around raising kids.  Florence is with Lucas two afternoons a week and one night so it’s nice that most of our child-raising philosophies overlap.

For example, Florence is a big fan of our cloth diapers and our attempts at reducing waste – a concept that was a stretch for some of Lucas’s nurses back in the beginning.  During the day Florence plays with Lucas, taking him through his different sitting and reclined positions and the toys he can reach and play with in each position. Florence reads to Lucas regularly, which Lucas especially loves because Florence is good at positioning him so he can reach out and turn the pages, something that makes Lucas extremely happy.

The greatest thing about Florence and Victor is that they’ve both come to love Lucas, and we trust them not just technically but also to really care for Lucas when we’re not here.  For that we feel very fortunate.  But to be honest, it’s still sometimes incredibly challenging.  For example, sometimes we have different opinions about the frequency and technique of suctioning Lucas, or how often to change his trach.  But at least for now, those moments of tension are outnumbered by the pleasure and comfort we get from seeing Lucas enjoying his time with Victor and Florence.