by Ashley DeStephano
When we were introduced to palliative care in 2011, we entered into the relationship as “guinea pigs,” as our son’s primary care doctor so eloquently put it. My son, Wyatt, has mitochondrial disease. The palliative care team was new to the hospital and consisted of only one team member at the time. Wyatt was very sick with fungal sepsis and his body was struggling to function, to say the least. We decided at that moment we needed to give him comfort and try our best to control his pain. We worked our way through multiple choices before settling on the one that gave him the most relief. Weeks later we left the hospital after the yeast was cleared from his system, though his body didn’t rebound from the trauma. We were admitted into hospice care at that time, with the palliative care doctor from our hospital as Wyatt’s hospice attending. The outlook was bleak.
But that was 19 months ago.
Wyatt wished to spend time at home, and having palliative care and hospice involved was one way we have been able to accomplish and honor his wish. We worked closely with both his primary care doctor, who is part of a team of physicians who care for children who are medically complex or critically ill, and the palliative care physician. I cannot say it’s been easy to maintain this intensive level of care in our home. We had times that we all needed to adjust and re-adjust our communication methods with his medical team as we ran into issues along the way. It took time to sort out just how we were all going to care for Wyatt, each of us with different roles: hospice, palliative care, our main doctor, and us, as his parents.
More than Pain Control
I want to be real with you when telling of our personal experience. When we entered into palliative care, Wyatt primarily needed pain control, like many others who seek out a team like this. As our son’s health declined, our focus began to shift, looking closer at his quality of life. To be completely honest, our focus was shifting before ever talking with palliative care, but the goal of pain control became more prevalent, and we entered into this care with an open mind to do whatever we needed to do.
I had heard of palliative care from other families and understood what their purpose was within the team of care providers. I looked forward to seeing my son more comfortable again. But what one doesn’t always realize, and is often a hard truth, is that you can’t always take away the pain. In my son’s case this is true. He has pain and sometimes we can make it better, or we can achieve “good enough” with a cocktail of medicines, and he’s able to be distracted and happy. But in this journey to achieve pain control, there have still been many times that his pain has been out of control. It’s disheartening, can be very frustrating and often leads to a brainstorming session for “Team Wyatt.” We accepted the risks associated with aggressively treating his pain, and we quickly learned those risks to be very real as we sat in the Pediatric Intensive Care Unit watching cardiac monitors and willing our son’s heart to begin beating as it should, just six weeks after beginning to work with the palliative care team.
From the time we began working with them, the hospital’s palliative care team grew to include more doctors, a nurse practitioner and a social worker. As their team was growing, Wyatt’s care became too much and exceeded their experiences. At that time his care was handed over to a hospice attending who occasionally assisted the hospital’s team with consults for my son’s care. I can say now it was a very good switch, though I did question the decision initially.
We are not necessarily the norm. We are certainly living outside the box. But there are other families living outside this box with us, I know. (Maybe it’s even you!) Wyatt has stretched his palliative care doctor, primary care physician and hospice attending’s vast experiences to their very limits these last few years. The doses, amounts and types of medicines that he requires, benefits from and receives is inconceivable, extreme and has even been called “inhumane” by a doctor who was not comfortable with his needs. I can’t argue with the fact that it is extreme, but I will argue that my son’s care is not inhumane. Clearly, she was not correct in her perception of the situation, but her comment came from her own lack of comfort and experience for the life that we’re very much living. It happens. I’m sure we have all run into that doctor who is firmly set against a certain path of care.
I’ve learned palliative care can look so incredibly different for everyone. What one person views as inconceivable, another lives as normal. So, to me, at this point in our palliative care and hospice experiences, only what’s best for my son matters. It doesn’t matter what anyone else thinks we should or should not do…it’s about my son, because it’s his life. What works for him and our family may not work for you or your child. And that’s OK.
It Takes a Village
It’s true, it does take an entire village to give our family the opportunity to live life together at home. From the infusion nurse who is often at our home, to the respiratory company, and the multiple infusion pharmacies and supply companies that keep our home stocked with what we need at all times. The hospice nurse visits our home several times a week, typically. We choose not to have shift nurses in our home, so his care falls solely in our hands. We wouldn’t have it any other way; this is our normal and I do it all for him because I still can.
The music therapist that works with our hospice company comes weekly to play music and sing to Wyatt. And some days he feels well enough to play instruments along with her. Wyatt really looks forward to music therapy each week and often persuades the therapist to play just one more song to extend his time with her.
We have an amazing team who goes above and beyond for our son. I think communication among the entire team is what keeps it all working. We are able to stay in close contact with our main doctor via email, and the hospice attending gets regular updates following each visit with the hospice nurse as well. We’ve all been able to sort out a system that we feel comfortable with, which is allowing us to live this life together, at home and as a family, the best we can.
We have been through a lot of ups and downs with the developing palliative care team at our hospital. We had our disagreements at times, multiple life-changing discussions involving end-of-life decisions and shared the frustration of not knowing what to do for my son next. But while the road was bumpy at times, they also guided us to where we are today.
We all do the best we can. Palliative care, pain control in particular, can be hard to achieve and it does come with its own risks. But it can also come with great rewards in quality of life. If it were not for the complete cooperation and group effort of Wyatt’s main doctor, palliative care doctor and hospice team, we wouldn’t have had the chance to help our son live his life and make many of the wonderfully grand memories that we were able to experience in the last 19 months. For that I am eternally grateful.