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Newsletters: A Matter of Trust
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A Matter of Trust

Laura Bailey, RN, BSN

Mike, Laura, and Tyler, 2009.

I am the mother to a medically fragile four-year-old boy, Tyler, who suffers from short bowel syndrome. As a result of the short bowel syndrome, Tyler has a central venous catheter for the administration of parenteral nutrition (PN). Though I am a registered nurse and am now capable of providing all of Tyler’s home care, this care was never taught in nursing school at the level I need to know—and Tyler didn’t come with instructions. I had to learn on my own how to best administer PN at home (HPN) and proper line care.

 

It has taken me a decent amount of time to learn everything. I have spent the past four years educating myself about Tyler, how to best care for him, and how to care for his central lines. As I’ve learned, I’ve become more and more diligent with each step of the process. I have worked so much with Tyler that it has become difficult for me to hand over any of his specialized care to anyone else. This leaves me with a lot of work, but there are a number of plusses to not sharing the nursing side of Tyler’s line care.

 

Infections

Of course line infections scare me. They are life-threatening events and should be prevented as best as possible. Tyler has had several line infections, with most of them occurring the first year of his life. Those infections were all managed pretty easily with antibiotics and occasionally a night or two in the hospital. Fortunately, it is unusual now for Tyler to end up with a line infection.

 

I realize there is no guarantee Tyler will remain infection-free if I am the only one accessing his central line, which at present is a PICC (peripherally inserted central catheter). However, I have significantly more experience working with Tyler in this regard than anyone else does, and with only me accessing Tyler’s line, I am confident that everything possible has been done to help prevent any sort of infection. There’s no question in my mind regarding his central line care.

 

I know without doubt everything that happens related to Tyler’s PICC line care because I’m the only one involved in assessing and caring for it. This allows for consistency of care. Being that I change Tyler’s dressings, I know what’s normal for him and what’s not from week to week. I am able to evaluate his site and note any changes, like line placement and signs and symptoms of infection. There’s no question about what the site looked like previously or how long something has been the way it is.

 

It would be difficult to monitor the site if I had to depend on others to maintain it. For these reasons and others, I do not mind the extra work associated with being the only one to care for Tyler’s PICC line. I have peace of mind and that’s worth a lot to me.

 

Mom’s Touch

At this point, I know when Tyler is brewing something before he even spikes a fever. I can tell just by looking at him. I watch my son closely, monitoring for signs and symptoms of illness, noting what his unique cues are when he is sick. Perhaps it’s motherly instinct or maybe it’s from my experience with him, but I know when something’s wrong.

I know how to hold him in a way that’s nonthreatening to him, yet keeps his hands securely out of the way while I’m connecting his HPN. I have earned his confidence with dressing changes. He will hold his arm out for me without a struggle as I complete the procedure with sterile technique.

I have come to learn the best way to wrap his arm to keep his line clean and protected. I have learned how to make the line secure under the weight of the large HPN bag and HPN pump Tyler drags along when he crawls faster than I am able to follow, acting as his IV pole.

Tyler allows me “all access” to himself and his central line because he has learned to trust me. All I do is in an effort to keep Tyler infection-free and to keep his central line in good working order.

 

Dad’s Role

My husband, Mike, does help with Tyler’s care. He takes Tyler for long walks, changes his clothing if Tyler needs it, prepares his favorite snacks, watches him while I go to the grocery store, and plays with him. He does all of the typical things dads do. He also helps me put some medical supplies away and takes turns with me chasing Tyler around the house with his HPN and pump. I appreciate and want Mike’s help.

Mike is also willing to help with connecting and disconnecting Tyler’s HPN. However, I keep this task for myself. I feel asking Mike to jump in now and try to learn what has taken me four years to master would be unfair of me. There are just too many fine details that I do without even thinking about it for him to learn right off the bat. But Mike does know how to do it if he absolutely needs to.

 

If I could go back in time, I would have included Mike while I administered Tyler’s HPN and learned everything else that goes along with central line care. It was my mistake not to involve him more in the beginning, when we were first faced with life with a central line. Apparently, I forgot the “team” in “teamwork,” leaving myself with a lot of work. As they say, hindsight is 20/20. But as mentioned above, there are a lot of plusses to managing Tyler’s line myself.

 

Caution Warranted

Unfortunately, I have found that when Tyler has been hospitalized, some of the nurses have not been nearly as careful as I am with sterile technique. As a result, it has become increasingly more difficult for me to rely on my own peers (nurses) while Tyler is in the hospital.

 

There was one incident when Tyler’s tubing came unattached from his PICC and ended up on the floor of his hospital room. When the nurse came in, she nonchalantly picked up the tubing, wiped the end off with a small alcohol pad, and went to reattach it to Tyler’s PICC without any consideration for where that tubing had been and the contaminated T-clave that had been rubbing against my son’s clothing. My jaw hung open in disbelief. All I could say was, “No, no, no!” This event shook me to my core, as the consequences of that nurse’s actions could have been deadly.

 

On another occasion, the nurse who was bringing Tyler’s PN to his room to hang it allowed the tubing to drag on the floor all the way down the hallway, as he swung the bag of PN back and forth in merry fashion. Fortunately, I happened to step out and see this, and I insisted on new tubing.

 

I could cite several examples like these. Now, when Tyler is in the hospital I am leery of anyone who enters his room with the intention of accessing his PICC. In most situations, I insist on being the only one who even touches his line. I often am met with great resistance, but I hold strong. My son’s life is dependent on proper care and I’m not about to take any chances.

 

Personal Preferences

Tyler happy as a clam, playing with his toys in 2006.

 

I belong to an online group of parents and individuals who are all managing short bowel syndrome. The people in this group have been a tremendous help, both for general information and emotional support. I have found that I am not alone in choosing to be my child’s only central line caregiver, but also that there are some who allow others to help.

 

Within my group, there are some parents who feel as I do and keep the central line responsibility strictly to themselves. Others share that responsibility with their husbands. Some allow their home health nurses to connect and disconnect their child’s HPN, once the nurse has established his or her competency.

None of the parents, however, simply assume that because someone is in scrubs he or she knows what he or she is doing, and allow free access to their child’s line. It takes time to determine if an individual can be relied upon with our special and precious children. Most of our children are considered “frequent fliers” in hospitals, so some of the parents have come to trust the nurses whom they’ve come to know. However, these parents still “watch the nurses like a hawk and gently encourage them to use [their family’s] protocol” (as one parent in my group put it) because they know their protocol is effective in preventing infection.

 

Trusting Others

I’ve always found it a little tough to entrust my children to others, but now that one of my children has medical problems it’s a lot harder. I have more to consider than how well I know a person or if that person has good references. For me to feel comfortable, I have to know that anyone caring for my son watches out for the usual childhood hazards, but also knows the many, many other things that pose a threat to him, even if some of those things seem harmless—like getting wet.

 

It’s almost as if anyone caring for my son must be able to watch him as a typical child and care for his central line as a separate entity. Tyler is a challenge because of his medical issues and I do not leave him with anyone other than my husband or his grandparents, who all know the drastic ramifications of PICC dislodgement and septicemia.

 

I remember the day that I left my daughter, Chloe, at a home daycare for the first time. She was two years old and I was in nursing school. I worried that she would be confused and scared, but I totally trusted the woman, Christine, who would be caring for her. Christine had worked at my elementary school when I was in the first and second grades, and I clearly remembered her being soft-spoken, kind, and gentle. I had visited her home prior to leaving Chloe for the first time and it was warm, friendly, and filled with art projects that her little kids had created.

 

It was relatively easy to trust Christine, who had experience and had proven reliable with my daughter’s care. But circumstances have changed for me. It’s not so easy for me to trust others with my son, who requires so much more than my daughter did.

 

If there were the equivalent to Christine for Tyler, a loving and reliable person who had a strong history of caring for central lines with little infection, maybe I would trust again …maybe. For now, I will continue to be my son’s only nurse and I will continue to do so happily, with pride, peace of mind, and a lot of love.

Tyler’s mom, Laura, keeps a blog about Tyler and their experiences, and invites you to visit it at http://www.freewebs.com/tylersdog

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5/6/2017
Oley Regional Conference

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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