Madison's story: Palliative care at Texas Children's

When we hear “palliative care,” most of our first thoughts are associated with end-of-life care. It is end-of-life-care, but it’s also so much more. We experienced this firsthand at Texas Children’s Hospital in the fall of 2016.

Our daughter, Madison was in the pediatric intensive care unit (PICU) following multiple lung collapses due to an obstructive mass in her airway. She received a double lung transplant in 2015, but was then diagnosed with post-transplant lymphoproliferative disorder, similar to lymphoma cancer, in June 2016 and began chemotherapy at her local medical center. Madison’s airway collapsed later in October, and we were flown to Texas Children’s PICU, where we would remain for the following three months.

While we were pursuing more aggressive methods of chemotherapy, placement of an air stent placement and managing multiple other complications, our transplant pulmonologist requested a consult with the palliative care team. We were not surprised, mainly because we also recognized Madison’s complex and fragile state. What did surprise us, though, was how the palliative care team ended up helping us in more ways than we could ever imagine. They truly helped us survive and manage this extremely difficult time in our lives.

One of the most impressive ways our Pediatric Advanced Care Team (PACT) helped us involved “comfort care,” as I liked to call it. Madison was intubated at the time and depended on a ventilator due to a collapsed lung, incurring extreme pain. Our physician looked through all of Madison’s long, complex medical history, and noticed she was receiving a continuous, low dose of morphine, with an option to add more at some moments. He calculated her total morphine usage and adjusted her dosage higher, allowing her more comfort. This was a huge relief to Madison, which she communicated to her medical team by typing messages on her iPad.

Our palliative care team also assisted us through what we like to call the “command central,” where they coordinated Madison’s care through a multidisciplinary team composed of specialists each focused on treating her in their area of expertise. We were all brought together to meet a common goal, which often shifted regularly depending on Madison’s stability. We also had a “care conference,” where the entire team sat with us in a conference room to discuss Madison’s wishes and plan our goals accordingly. We felt incredibly supported by our palliative care team, who also walked us through the pros and cons of the multiple paths to take.

When you first meet your PACT, you quickly realize how much of an actual team this is. We visited with a physician, social worker, chaplain and even a bereavement specialist. Our physician gave us his personal cell phone number to contact him directly, whenever we needed it. We used this to our advantage once when Madison’s lung collapsed in the middle of the night and we called to discuss if intubating her again was the right choice.

Our common goal for Madison was to limit pain and suffering as much as we could, but to also consider any treatment that might indicate a possible recovery. After speaking with Madison’s physician, who knew her condition very well, we always felt determined that we were making the right decisions.

This team came through for us on so many levels. Our bereavement specialist was persistent about bringing Elsa, Texas Children’s therapy dog, into the PICU to see Madison after we told her how much therapy dogs had helped in lifting Madison’s spirits in the past. We told this to many of our care providers, but our team at Texas Children’s actually made it happen. Our chaplain would ask us if we needed anything from him nearly every day, and would often provide a prayer to be printed out and taped to the bed. Madison loved to look at these prayers, which would easily get lost during bedding changes and require replacement. Our social worker was also incredibly helpful in serving as a sounding board for us and for providing the moral support we needed.

Madison eventually stabilized, and was transferred back home to our local medical center near the end of December 2016 for extensive rehabilitation. Unfortunately, she developed additional complications and passed away in May 2017. We’re extremely grateful for our experience with Texas Children’s Pediatric Palliative Care team, and we deeply admire their expertise, compassion and desire to give us what we most needed in this difficult time. They have forever changed our perspective on what palliative care is and can be.

If you’re interested in learning more about the Texas Children’s Palliative Care team, click here.