Summer’s Lifeguard

Last updated on March 3rd, 2018 at 02:39 pm

Summers LifeguardOn October 13, 2006, at just 21 months old, my daughter, Summer was diagnosed with acute myelogenous leukemia (AML). Because AML is fatal without treatment (and even with treatment the overall survivor rate is low), Summer began intensive chemotherapy within hours of the diagnosis. The treatment process lasted over six months, with the majority of the time spent in-house at Children’s Medical Center in Dallas, Texas.

As part of her treatment, Summer had a central venous catheter (CVC) surgically implanted in her chest, through which, she received her medicine and treatment. Less than a month into treatment, my husband Brad discovered that part of Summer’s CVC was twisting, which could cause the tube to break, and bring about serious complications including the need for additional surgery.

After several unsuccessful attempts by the caring pediatric oncology nurses at Children’s Medical Center Dallas, to find a remedy, Brad and I realized we needed to design our own solution. During this time, Summer’s CVC broke twice within two days. (After three breaks surgery is required to implant a new central line catheter!) I contacted a family friend, Karen, a retired nurse who is also a sewer, and together we developed Summer’s Lifeguard™, a Central Line/Port Wrap.

The primary concerns were minimizing the risk of infection (due to no immune system) and avoiding additional surgery, by ensuring Summer’s (CVC) was out of her reach. The unique design literally wrapped the lines of the CVC around her body, with padding and soft fabric that cushioned Summer to make her more comfortable and allowed for her mobility. Karen, as a nurse, added some unique features that provided easy access to the lumens for administration of medicine, and color coded tabs that matched the lumens for easy identification by hospital staff and caregivers. Four drafts later, we finally settled on a design that met all of Summer’s needs. And now we have designed a version that is universal enough to fit any child regardless of where their CVC is implanted on their chest.

Although Summer reached remission in May of 2007 and enjoyed a wonderful summer, she relapsed in November 2007. Summer completed a bone marrow transplant in January 2008. She is facing many challenges, specifically chronic graft versus host disease (GVHD), but today I am blessed to say she is a happy, active pre-schooler.

When Summer was originally diagnosed, I would tell her that she was a soldier of God, and her “armor” included her entire family and friends, her medicine, and all the doctors, nurses, and specialists treating her. Summer’s Lifeguard is an important part of this soldier’s armor in her fight against cancer.Summer with SLG2

Due to the interest by other parent’s of critically-ill children and through the encouragement of the nurses and doctors at Children’s Medical Center, Karen and I have formed a company called SIYA, Inc, located in Texas. The mission of this company is to provide medical protection with safety garments and other devices for patients, while providing peace of mind for families. After three attempts, Summer’s Lifeguard received clearance from the FDA in May of 2009 as a class I exempt medical device which means that hospitals can carry Summer’s Lifeguard and nurses can determine if a patient needs the device.

We’re thrilled to know that through our efforts, we can now give other parents of critically-ill children a little peace of mind and comfort to their child.

HEALTHFUL HINTS

If your child has a central line or portacath, here are some things to consider:

  • Have your nurse use a Biopatch on the exit site of the central line or port as another precaution. (According to Ethicon 360’s website: “Catheter-Related Blood Stream Infections (CRBSI) are the 10th leading cause of death in the United States.”
  • Have the dressing changed weekly around the exit site of the catheter.
  • If your child develops a rash, examine what kind of tape is being used for the dressing, many children develop sensitivities to the tape.
  • When using Summer’s Lifeguard:
    • Have your child lay down on their back to put on the wrap.
    • If your child is a transplant patient, you will want to put on a clean wrap daily (…therefore, it may make sense to have at least one extra wrap available).

Signs of Leukemia:

Believe it or not, it is different for everybody, and it sometimes may seem minor, like a cold that just won’t go away. To that note- if your child is experiencing symptoms of illness or a cut/scrape, or unusual and a lot of bruising, that won’t go away- have a Complete Blood Culture (CBC) done right away.

Comments

3 Responses to “Summer’s Lifeguard”

  1. early autism signs and symptoms says:

    great ideas. I always follow your ideas and apply them.

    Just one question though. Have you made writing this blog as your profession or do you do this in your spare time?

    Just curious..

    • Stefanie Zuckersazucker says:

      Thanks very much for your kind words…it’s always nice to know when something you do makes a difference 🙂
      As for Pediatric Safety…sometimes it feels like a full-time job, but in fact it is something I do on the side. And it’s because of people like you who leave such nice comments that I keep it up. Thanks very much for coming by! -Stefanie

Trackbacks

Check out what others are saying about this post...
  1. Social comments and analytics for this post…

    This post was mentioned on Twitter by PediatricSafety: New post: Summer’s Lifeguard http://bit.ly/6nLgUs #pedsafe…



Speak Your Mind

Tell us what you're thinking...
and oh, if you want a pic to show with your comment, go get a gravatar!