First Do No Harm

 Age brings wisdom, and with this wisdom, I have learned, “The pen is mightier than the sword.” It is also much more cathartic. Unless the day falls on a holiday or special event, we have made Thursday Jayde’s therapy day. It has been the one weapon in her arsenal of treatment, which helps her survive week to week. Two weeks ago, we endured a rather unpleasant experience during Jayde’s IV therapy session. The three of us departed the hospital feeling angry, frustrated, and with an overwhelming sense of concern. Never good emotions when receiving healthcare. I decided to send the following letter to the hospital's care team. Upon returning last week, Jayde was treated like the princess Chris, and I consider her to be. I can only hope this will continue in the future.

"In the world of chronic illnesses, especially the invisible type, you become conditioned to doctors not listening or rather not hearing you. We are years past the random testing and misdiagnosis. We have moved beyond the frustrating years of “Its just growing pains” and “I think she may have anxiety.” Still, I feel like we are years away from consistent quality care. 

Our family is in a medical setting at least once a week, some weeks as many as two, three, and four times. What I have found to be prevalent everywhere we turn is a lacking bedside manner. Patients are consistently being dismissed as if they are ignorant of what is going on within their bodies. As with any profession, training should be ongoing. I know that bedside manner is taught in medical and nursing school. Still, I am left wondering how many professionals we encounter were absent for that particular portion of their curriculum. 

Once medical school is complete, there is still knowledge to acquire. Learning should not cease because there are official letters behind an individual’s name. I am uncertain when it became unpopular to recognize patients understand their bodies and admitting you may not know all there is to know - because no one does. I would think genuinely listening to your patients would be common sense. Though this would require one to lose the God-like complex (we too often witness) and understand they themselves are human, just like the patients they treat. 

In May, our daughter, Jayde, had surgery at Johns Hopkins Children’s Hospital for Powerport placement. Each week we check into the pediatric unit of your hospital, where she receives IV therapy to help her battle POTS, EDS, and SMAS. After the hospital cutting the IV team, which was better qualified to access her troublesome veins, it did not take long for her veins to become uncooperative, and she became a human pincushion. Even the most skilled nurses found her to be a challenge, hence the need for a port. There are many complications, which can arise with a port. Before our daughter underwent her port surgery, we viewed multiple videos on the proper procedures, protocol, and care. Following these steps is essential. If not, her port will quickly become infected, posing a risk for her to become sepsis.

During our most recent drive to the hospital, I was silently praying, "Please, God, allow today to go smoothly." After the prior week’s blood clot fiasco and a five and half hour session, I knew Jayde needed an easy day. Upon settling into our room, we were promptly greeted by one of our favorite nurses, Leslie. I became anxious when she informed us Sara, the charge nurse who has accessed Jayde's port since she received it, was not on duty. Leslie and Sara consistently exemplify going above and beyond, and we know our daughter will receive quality care.

There are only three nurses in the pediatric unit trained in port accessing and de-accessing. Unfortunately, none of them were on duty during our visit. We all chatted while waiting for a nurse from another part of the hospital to arrive. Upon the nurse’s arrival, we quickly realized she was no “Sara.” She did not have the correct needle, despite me showing her a photo with the information for the proper non-coring needle and telling her a Powerport needle was necessary. She told me, “This one will be just fine.” She wanted to use a different size, despite our daughter telling her what size she should use. Granted, Jayde is not a doctor, but she is well versed in her body, her conditions, and her healthcare. The nurse did eventually acquiesce. Still, Jayde did not deserve to be dismissed by someone who has no prior knowledge of her care or experiences. The nurse was in a hurry to access Jayde's port, not allowing the antiseptic to dry on its own (which will cause blistering under her bandage). Instead, she wiped the area with gauze. Overall, her technique was lacking, making us grateful she is not a pediatric nurse but giving us cause for concern when our daughter outgrows the pediatric unit.

When the time came to de-access Jayde's port, two nurse externs arrived in her room. It was obvious one was teaching, and one was learning. The first words I heard, "We only use the blue gloves when dealing with chemo patients." As she put on the white gloves, without washing her hands, she commented, "These are like food service gloves."  I was grimacing as I observed these women preparing to work on my daughter. I could not sit silently, knowing they were on the verge of placing her at risk. "Yes, they are like service gloves, and you should be using the blue sterile gloves when de-accessing her port." The young nurse met my comment with a tone of sarcasm, "Are you sure?" "YES. I am." "Well, we don't have any of them." My frustration began to boil over, "Well, go get them." She quietly huffed while grabbing the hospital phone in her pocket. I was preparing to place myself between the nurse and Jayde and have my husband retrieve Leslie. 

Thankfully, the nurse externs departed, returning with sterile gloves. Without donning a mask or giving Jayde one, the nurse hastily removed the needle, and Jayde began bleeding. Remember the wrong needle from the first nurse? Hence all the bleeding and subsequently swelling, hardening, and bruising. These are incidents, which have not occurred before this visit. The young nurse did not flush my daughter’s port with saline, before the heparin flush. She did not bother to clean the fresh wound before she slapped some gauze and a Band-Aid over it, then hurried out. I am aware the protocols for de-accessing a port are less sterile than when accessing it. However, I question why? There is now an open wound that allows the perfect opportunity for germs to seep in and infection to fester.

We have been quite fortunate to find several amazing physicians, nurses, and surgeons along our journey. I have the utmost respect for these nurses and doctors. However, when a medical professional's egos cause them to be callous and deaf to their patients and caregivers, my respect takes a flying leap out the window. On this day, it dove headfirst.

Leslie sensed our frustration as she empathizes, voicing her own frustration for what Jayde endures on a routine basis. She retrieved a sterile kit, removed the blood-soaked gauze, cleaned the port site, and dressed appropriately. Now mind you, because she is not trained in port care, she asked that Jayde and I tell her what she should do. 

When the student becomes the teacher

Leslie has been a nurse for over forty years. I have no doubt she has more experience than the other three nurses who treated Jayde today combined. Regardless of her background and experience, she did not allow it to prohibit her from requesting us to walk her through the steps of accessing and de-accessing Jayde’s port so she could accurately treat her. The problems that arose during our visit could have been avoided if the nurses took a few extra minutes and chose to hear their patients. Shouldn’t a patient’s safety and risk of infection be worth those few minutes? 

A quote that often runs through my mind, especially when we are dealing with medical professionals is, “Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them.” It reminds me of a line from the Hippocratic Oath, “First, do no harm.” Yet, there are numerous ways doctors and nurses can inflict harm before lifting a finger.

I do not want to be accustomed to doctoral apathy, nor do I want that for my daughter. I imagine a world where inflated egos are non-existent; a place where more people are skilled at the art of listening: a world where the Leslie’s are not a rarity, but commonplace."

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