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Newsletters: Trust in the Balance
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Trust in the Balance

Full disclosure: I have control issues and am somewhat anal-retentive. When I read Laura Bailey’s article in the May/June issue of the LifelineLetter, it struck a chord with me. Early on in our child’s care, I had many feelings similar to those Laura expressed as she stated what she felt were the benefits of being the only person to care for her child’s central venous line. I think what Laura has done borders on super human—but I feel there needs to be a balance struck on quality of care and caregivers’ quality of life. I feel there is a need to allow a couple of people into the circle of care and still maintain continuity.

Unlike Laura, my background is not in nursing, so everything was new and scary to me when my son was born with Hirschsprung’s. Our insurance provided little nursing coverage, which put a lot of responsibility on my husband and me once we were home. While I truly was the primary caregiver, I found it beneficial to have my DH [dear husband] as a back up. Whether it be illness, injury, or just a need for a break, I knew there was someone there I could depend on.

And while I agree not all medical professionals are as careful with our children’s lines as we would be, I believe that rather than avoid them we should treat each interaction as a teaching opportunity. We can do so either by preemptively informing staff of our protocol or addressing issues as they come up. If their protocol is different than ours, I try to find out why. Over the years we have seen many changes in how things are done. Most often they are supported by some recent study—regarding types of flushes, types of caps, scrub time, dry time, and the list goes on—but I also understand the “if it ain’t broke, don’t fix it” approach.

With our son’s frequent hospitalizations we’ve gotten to know many of the nurses over the years. We have had several come home and care for our son so that my husband and I could get away—something I think is needed in every relationship, but especially when there is so much added stress.

As parents it is our challenge to care for our children to the best of our abilities while at the same time creating independence as they grow. Even at a young age they can begin to advocate for themselves. We teach “stranger danger” to young children, and we can similarly teach basic line safety.

As our children grow we need to continually entrust them to their own care. Last year I sent my son to camp with a very new central line—after him not having a line for seven years—and while I was hesitant, I believed the benefit of the camping experience far outweighed my fears. A conversation with the nursing director, where I learned about her familiarity with lines and heard the questions she asked me, put me more at ease. It’s not that I didn’t worry, but he did not miss out on the experience.

—Ann Weaver, Chicago, Illinois

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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