Good Riddance

A hearty farewell to our son’s Broviac central line.

My son had a tube in his chest for nine months. This week, he finally had a procedure that took the damn thing out. I am grateful for the life-saving medicine this port delivered, the hundred-plus, non-needle blood draws it helped facilitate, and the medicine, TPN, and other interventions it helped deliver. There’s no doubt that having a line feeding directly into his heart was an essential part of preserving his life.

But otherwise it can officially eff off all the way into the sun.

To celebrate this momentous occasion for our family, here’s a deep dive into this medical tool you’re probably unfamiliar with. And why it’s a helpful, but absolutely horrible thing.

There are lots of ways to grant immediate access to the human blood stream on a regular basis. Our son previously used PICC lines (peripherally inserted central catheters), tucked into the crook of his arm. They’re useful, but finicky. After one was accidentally pulled out during a routine lab visit, his medical team instead suggested a central line. It was more reliable, safer, drew faster, and recommended for patients that needed port access for an extended period of time.

We went for it, and it got the job done. But it also sucked, big time, for three reasons.

It couldn’t get wet.

Existing on the outside and inside of his body, simultaneously, meant he basically had an open wound at all times. So if anything got in there, it could get infected and he’d get sick real fast. So that meant no swimming, no water balloon fights, and no goofing around with the garden hose. This wasn’t new to us, as we’d been dealing with the PICC line for some time, but it was much more difficult to “water proof.” Anytime he spilled something on himself I freaked out. But all that was avoidable. For a six-year-old boy, unfortunately, bathtime was not.

Baths are supposed to be fun. Kids splash around, play with different toys, listen to music, and have precious alone time. With the PICC line we were able to use a handy rubber sleeve designed to cover arm casts (here’s a link, in case you need to get one of these puppies). Baths with the Broviac line now required the dreaded shower shield, a square plastic sheet with edges that stick to human skin. Because of the central line’s placement on the left side of my son’s chest, to encase the line, the shield had to wrap under his neck and right armpit.

No size fit him quite right. The sticky parts would pull the wrinkles on his neck. The plastic corners felt pokey against his sensitive skin. It peeled up in record time no matter what we did. We often worried our neighbors would think we were torturing our kiddo because putting this damn thing on made him scream at the top of his lungs, and we couldn’t blame him.

We let him beat up each sheet before applying it, crumpling it up and throwing it to the floor, because we hated the awful thing almost as much as he did. I had to drape my wife’s shower cap over his shoulder and press down hard when we washed his hair, because the seal around the edge wasn’t perfect, and we couldn’t take any chances. When we’d get him out of the tub (a two person job, every time) we’d rapidly dry all around the shield and then have to peel it off, which was another layer of annoyance because that obviously feels awful.

After we got the line out we put our remaining shower shields through a paper shredder as my son cackled with glee. The sticky bits got caught in its teeth, but it was worth it.

It needed a dressing change. Every. Week.

Just saying the words “dressing change” was enough to bring my son to tears. At first we drove an hour to the hospital each Sunday so a nurse could perform the complicated task. When a PICC bandage needed changing, only a nurse was qualified, with two other nurses as backup. The Broviac dressing change was, by comparison, much simpler. After a few lessons at the infusion clinic, my rockstar wife trained herself to do it so our kid could lie down on his own bed, in his own room, hopefully making the whole thing a bit less harrowing.

This was a heavy duty bandage, so we had to use a spray remover to soften up the adhesive. Even after drowning the thing it would still stubbornly stick to his skin. Once it was off, my wife had to clean the area around the port, wait for it to dry, apply a skin prep, wait for it to dry, and then delicately place the next bandage, making sure to coil the top half of the line inside. All while wearing blue rubber gloves that loved to get stuck to anything remotely sticky.

Because she’s incredible, my wife would pull our son out of his panic by asking what he wanted her to write on the last strip of tape. She would scribble his name, followed by “The Brave,” Mom Loves U, or a series of Xs and Os. He was proud of himself after finishing it each time, but it still clearly took a toll. Dressing changes were the hardest part of the whole experience.

Usually my wife would have to decompress afterwards. While she’s strong and cheerful on the outside, invading the personal space of your own kid in this way feels like crap. A weekly, family retraumatization. A necessary agonizing ritual to keep our son safe. Not fun. At all.

It dangled off his body all the time.

I’ve never experienced anything like this, personally, so I can only imagine how annoying that must have felt for nine months. My son did an astounding job at putting up with it. Every once in a while he would delicately say “...ouch” after sliding headfirst down a moderate slide, but otherwise he acted like it wasn’t there. It’s a miracle he tolerated it as well as he did.

The presence of the line meant I couldn’t really rough-house with him. We couldn’t wrestle or box or bump into each other like I see other sons and dads do. I hesitated picking him up and playfully plopping him on the couch, or lifting him out of the bathtub without pulling off the shower shield. This exposed part of my son was suddenly off limits. It was visible through his shirt. A weird bump, on top of his distended belly, which at times felt like a neon sign saying, “our son is different.” A constant, physical reminder that we were managing a crisis, and it needed to be respected.

If it’s not clear by now, I HATED THIS THING.

We asked to keep the central line after it was removed, so we could let our son destroy it in the most insidious way possible, but they had to dispose of it at the hospital. Oh well. At least we know they incinerated the damn thing.

For anyone dealing with tubes and ports and bags and so on, I hope beyond words that it gets easier. Take care, and thanks for reading!

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