Erin serves as the nurse coordinator for our pulmonary hypertension (PH) program. We often call her "our rock" as she handles the patient load of our nearly 350 active PH patients amongst 7 providers, 1 nurse practitioner by herself. She handles our prior authorizations, triaging of patient calls, inpatient/outpatient nursing education, and participates in several hospital and PH committees. She is an absolute superstar at her role, and our patients and families benefit from her expertise and care.
While it is difficult to pick one specific example that demonstrates her extraordinary compassion for our PH patients and families, I think of one specific example that exemplifies this. Our program is one of 9 accredited pediatric pulmonary hypertension centers, TCH being the only one in the state. We get many transfers from outside hospitals, and often these patients are quite sick. We recently received one transfer with a new diagnosis of idiopathic pulmonary hypertension. This patient underwent a cardiac catheterization and was diagnosed with severely elevated right heart pressures and required initiation of 3 medications for the management of these pressures including a chronic infusion via a home pump. The patient and family were extremely anxious about this new pump and what this would mean for the patient. Erin took additional time out of her day to go over with a translator (in addition to the education and training provided by our specialty pharmacy nurse) with the family using a practice pump and catheters and provide specific education. She was here until nearly 8:00 pm that night but was committed to alleviating the family's concerns.
Erin goes the extra mile to ensure that every patient and family have what they need. She pours her heart into the care of our patients and will advocate for them with their specialty pharmacy if they are having medication issues, with their PH providers if there is a concern with an aspect of their care, and with their home nursing companies if there is some discrepancy or issue with their care.
As a fellow nurse, Erin is such a beautiful model of what a nurse is and should strive to be. I am inspired by her every day.
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Erin Ely is one of the most outstanding nurses with whom I have worked in my 19+ years at Texas Children's Hospital. When we decided to pursue national accreditation for our growing Pulmonary Hypertension (PH) Program, Erin was hired to become clinical program coordinator. She has served as the hub for communications with patients and families, for interactions with pharmacies and insurers, the generation of letters complying with requests for prior authorization and for overseeing our busy clinic schedules. Families of children with PH quickly learn how scary the disease can be and how expensive the medications are. Erin provides information, reassurance and a steady reassurance to these children and their families. She has spoken at national meetings and recently co-authored a manuscript for publication. She now has seven physicians working in the Program which increases her already enormous workload. When I think of Erin, I see her smile, I count on her reliability and praise the sensitivity that she shows our patients and families. She is a credit to the nursing profession.
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Erin has been an incredible team player for the Pulmonary Hypertension (PH) team. She truly is the glue that holds the team together. Erin is the sole point person for all our PH patients—fielding and triaging their phone calls, managing all the outpatient REMS reporting, planning and facilitating discharges, prepping for clinic, coordinating with PASS clinic for all surgical and cath procedures for our PH patients, educating other nurses on PH and prostacyclins, and submitting all the referrals and prior authorizations, among numerous other responsibilities. Additionally, she provides hands-on teaching with families starting SQ treprostinil. For example, we had a PH patient transferred to us from out-of-state. The team had identified that the SQ techniques the family had been taught weren't optimal. Despite her busy schedule, Erin brought her example set up and spent a few hours showing the family how to reinforce the site and how to create a dependent loop. The parents were extremely grateful for her expertise, professionalism, and the tips Erin provided. Through her education, the family was able to ensure the sites stayed in place longer, thus minimizing unnecessary pain and anxiety for the patient and family.
Erin is also a fierce patient advocate. PH medications not only are expensive, but most do not have an FDA labeled indication, making it very challenging to obtain approval from insurance companies. Erin does an incredible job advocating for our patients, dedicating hours of time seeing these PAs through. Additionally, recently the REMS programs for bosentan and ambrisentan changed. It resulted in a significant amount of inefficiencies and additional work. Being the strong leader she is in the PH world, Erin headed up a workgroup to survey PH centers on their experience with the new REMS programs and passed along the results to the FDA to request their involvement and bring about change to the REMS programs.
We as the PH team are not the only ones who hold Erin in high regard; her patients and families do as well. At some of our recent PH Support Group gatherings, which she also helped to plan, you could see how much the families love Erin—making a beeline to her to thank her for all her care. She clearly makes a lasting impression on all the families. For example, there was one family in particular where the father could be difficult to reason with, especially as we were needing to escalate therapies for his child. Over a period of months, Erin patiently answered all of his questions and explained rationale at each point of escalation, often taking the brunt of his frustrations. When the family and patient finally agreed to the last line therapy, after all was said and done, the father expressed his appreciation to the team and specifically to Erin for walking with them through all these hurdles.
It truly is an honor to work alongside Erin. She truly is an Extraordinary Nurse, demonstrating the highest level of care, compassion, and leadership even on a national level.
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Ms. Erin Ely is a clinical program coordinator for the Texas Children's Hospital Pulmonary Hypertension Program. She's been in this role since 2015 when she transitioned from the Progressive Care Unit (PCU). Even though this job was posted as a program coordinator which could be served by non-nurses, Erin has elevated this job to one that can only be done by a nurse with significant clinical expertise, educational background, and training. Erin single-handedly supports 7 physicians and 1 nurse practitioner to take care of 350+ patients from all over the country. She is incredibly efficient and never says "no" to anything when a patient's health, safety or well-being is concerned. Erin has come to the office on the weekend to make sure that faxes have gone through, to avoid any interruption in medication or patient care. She has stayed well into the evening to make sure that patients do not experience any break in their care. Our patients know Erin's number by heart and she is their first call for everything from a runny nose to cardiorespiratory failure in an outside ER.
Part of Erin's job is prior authorizations. She has to work very closely with private specialty pharmacies and through this process, realized a significant gap in communication. This led to inefficiency in processing authorizations and delays in providing therapy for the patients. So Erin worked with private specialty pharmacy leadership to identify point persons for improved communication and efficiency. She has also created a pathway within these specialty pharmacies to arrange bedside courier service for the families, in a meds-to-bed model to ensure safer discharges for our patients. I can confidently say that Erin is one of the most efficient nurses in this business with regard to securing medications for pediatric PH. Erin was recognized for this work at a higher level when she was asked to give a podium lecture at the International Conference Neonatal & Childhood Pulmonary Vascular Disease in San Francisco (2016).
Not only does Erin go above and beyond for patient care, but she also gives 100% for our program. When we applied for accreditation, Erin printed out the (then) 200 patient list and line-by-line, identified patients for inclusion into the accreditation registry. She was and is still, my right hand for this program and we would not be this successful today if it were not for her dedication, her vision, and her commitment. Erin is constantly in touch with national trends for PH care, patient advocacy, and education. She leads nursing education for PH within TCH and regularly participates in bedside education for families, often coming early or staying late to get this done. Erin is a valued member of our team and never hesitates to speak up for patients and when she does, everyone listens.
An example of Erin's commitment to patient care occurred a few months ago in the clinic. One of our extremely sick PH patients presented to the clinic without her continuous oxygen supplementation. The family stated that they had run out of oxygen a few days ago and the DME Company refused to deliver more. Erin quickly started oxygen for the patient in the clinic and once she was stabilized, Erin called the DME Company. Unfortunately, the DME Company stated that there was nothing they could do at this time. Erin was not satisfied with this answer and demanded that oxygen be delivered to the clinic that day. She continued to stress the incredible risk of not treating hypoxemia in pulmonary hypertension. The DME company relented and agreed to deliver oxygen to TCH. Erin stayed by the patient's side until the DME Company arrived, even though clinic had ended hours before.
The above is just one example of Erin's commitment to extraordinary, compassionate care. She celebrates our patients' victories with them and shares their tears when sorrow abounds. She is the consummate nurse and an inspirational colleague. Ms. Erin Ely is truly, truly a DAISY Nurse.