Posted by Every Wednesday morning, 17-month-old Ethan Hackney and his mom, Jenny, visit the 6th floor of the IWK for his protein infusion appointment. During these appointments, Ethan is treated for congenital nephrotic syndrome (CNS), a condition that has many complications, one of which causes his kidneys to over-filter and deplete his body from almost all of its protein.
In order for Ethan to continue functioning as the happy, playful little boy he is, these proteins need replacing. So, each week, Ethan and mom meet their nurses and care team, hold very still, receive needles, and infuse the proteins back in manually. The process is made easier by a port that was implanted last year, but even so, the discomfort involved in the procedure is an unavoidable constant for Ethan.
It’s situations like Ethan’s that make IWK Health’s commitment to pain management life changing for our patients. “Ethan is never afraid to come to his appointments,” says Mom.
Recently, IWK Health officially rolled out the Comfort Promise pain management program, adapted from Children’s Minnesota. This program promises IWK patients that we will do everything possible to prevent and treat pain using evidence based practices.
The Hackney’s have been taking advantage of the Comfort Promise’s tools such as sugar water, distraction techniques, comfort positioning, and numbing cream since Ethan’s diagnosis at just a few weeks old, well before our recent roll out. “This is just how the care staff at the IWK work, they’ve always wanted to help make Ethan as comfortable as possible during procedures. Even when pain and discomfort is unavoidable they still did what they could.”
With the Comfort Promise being officially implemented organization-wide, it is now easier to access and administer pain-management tools. The Comfort Promise also provides resources for both parents and health care professionals on how to reduce children’s pain and hopes to make more patients and families aware that there are things that can be done.
“The care team is always prepared to manage Ethan’s comfort. We apply numbing cream before the appointment so it has plenty of time to work, he’s had the sugar drops since his very first needle, and the nurses are fabulous at singing along with me when we get Incy Wincy Spider going to distract him.”
Like so many children that come through the IWK’s doors, Ethan will be visiting IWK doctors, nurses, and health care staff for many years to come and then making the transition to the adult system. “He will eventually need a transplant,” Mom describes. ”Technically he will no longer have CNS with a new kidney, but with a transplant comes other issues. This is going to be a life-long journey that Ethan will have to deal with.”
A key part of pain management is the impact pain has on the patient’s relationship and attitude towards future treatments. Many children who experience painful and uncomfortable procedures as a child can develop fears as an adult and, in some cases, avoid receiving care from fear of the expected pain.
Despite the countless needles Ethan’s received, from heel pricks, blood draws, dye insertions, peripherally inserted central catheter (PICC) insertions and intravenous draws, just to name a few, Ethan is still happy to attend his Wednesday appointments.
According to Mom, being armed with pain management tools for Ethan also provides her comfort in being able to control the situation and help Ethan through the process.
“I always feel empowered to advocate on behalf of Ethan’s pain and never feel awkward making the calls to take a break or try a different tool to keep him comfortable. There’s never an issue with us coming into the hospital and I think that’s because of the comfort he’s afforded to his situation.”
While the management of a patient’s pain takes special effort on everyone’s part, the impacts of a positive experience benefit all involved. The Hackneys would like to thank all of Ethan’s care team under the leadership of Dr. Philipp Acott, of the IWK Pediatric Nephrology department, who started testing Ethan at just two weeks old for suspected CNS. As result of this early detection, Ethan and his family are able to manage his condition exceptionally well.