Thursday, May 2, 2013

Swimming with a central line

It's that time of year where I start to see parents of young children with central lines ask the same question over and over again on the online support groups that I participate in. "How do you swim with a central line?"

Like other parents, we were told several things that Sam could never do when he had his central line placed at just a few months old.  Two of those were swimming and taking a bath.

We struggled with both of these things.  We wanted Sam to live as normal of a life as possible.  We like to be outside in the summer.  Family trips to the pool and camping trips on the river or lake were a huge part of our life and we weren't willing do give up those things.  

Our attitude has always been that no matter what we are told Sam can't do (like live past the age of two, survive without a transplant, etc...) we find a way to do it.  We will research and try things on our own, sometimes against the advice of a physician or two, because we didn't go through everything we have in the past five years to have Sam live in a bubble.  Living life itself means taking some calculated risks.  Jumping out of an airplane may seem crazy to some people, a parachute can fail.  You could get injured or even die.  But some people are willing to take that risk to have that experience.

Swimming with a central line is similar.  For some people it is worth the risk to have that experience of being able to swim.  There are ways to minimize the risk and safeguard a central line from becoming contaminated. 

Now, with that being said, I am not a doctor and I will never tell you that it is a good idea to go against your doctors advice.  Sam's medical team does not endorse swimming with a central line.  You need to do what is comfortable to you.  Have an honest and straightforward conversation with your medical team about what you want to do. Take things slowly and try a few methods to protect the central line if swimming is something you want to try to do.  Over the last several years we have become more comfortable with this as we have had more and more success with keeping both his line and site bone dry even after swimming for several hours.

For us it started with baths.  Then the baths got deeper.  Then Sam played in a sprinkler and with a water table.  Three years ago we added a four foot deep "pop up" pool to our backyard that we could chlorinate, filter and maintain.  Once we realized that we were able to consistently keep his line and site dry we have let him go into the river where we camp for short period of time and he has also spent a few days at the beach with us. He isn't into things that don't look clean, so he really doesn't enjoy a lake or river as much as a pool. This helps because he doesn't really submerge past his waist much if he is not in a pool.  While in our pool we do not keep as close an eye on the dressing for leaks, but outside of that we check frequently and pull Sam out of the water for a replacement guard if any leaking is detected.

We tried a few different ways to cover Sam's line and this is what we have found works best for us.  We use a similar method for taking baths which allows Sam to take a LONG bath once a week.

First a bit about Sam's dressing. Sam's normal dressing is gauze and  cloth tape.  We have been through many types  of dressings in the last five years and so far this has kept Sam's site the healthiest.
At night we cover his gauze dressing with Tegaderm to keep it dry and stool free.  We use a cut down piece of the paper backing from the Tegaderm on top of the gauze so that the Tegaderm can be removed without wrecking his dressing. This is our first layer for swimming as well.  Most people use this type of dressing to cover a central line and would skip this step.  
Supplies needed for keeping a line and site dry.  We use cloth (3M Durapore) tape and Tegaderm.  We have used large (15cm X 20cm) Tegaderm but sometimes it is hard to get it stuck down with no wrinkles and using multiple smaller Tegaderm pieces is easier.  We use 2 medium (10cm X 12cm) Pieces.  You could use three or more if needed.
We take a piece of paper backing from a Tegaderm and place it on top of the first Tegaderm dressing.  This prevents the outer layer from sticking to the first Tegaderm dressing. The colored writing on this paper also bleeds really easily if it gets wet so it is a good indicator of a leak.  This is taped down to hold it in place.
We then arrange and tape down his line on top of the paper.  Using the tape to cover any "sharp" edges such as the clamp or cap will prevent it from tearing the Tegaderm and causing leaks..
We then apply the outer layer of  Tegaderm one piece at a time making sure that there are no wrinkles in the outside edges.  If there are wrinkles we remove the Tegaderm and try again.  Wrinkles on the edges will leak. We also have smaller pieces of Tegaderm that we can use on any edges that we are not 100% sure about.
The finished product.  All ready for swimming.  We have had these last all day at the water park with no leaks.  If the outer layer does start to leak we can see it right away and it can be replaced prior to the line or dressing getting wet.

If there is any moisture under the tegaderm after swimming we change the clave on the Broviac as well as the dressing.  With all of the practice we have had we very rarely even have a small leak.

Recently this abstract was shared with me which talks about how swimming with a central line affects infection rates:

1 comment:

  1. As a mother of a 3 years old with a Broviac just wanted to say THANK YOU VERY MUCH for spending your time sharing your experience.