How to Improve Your Medically Fragile Child’s Quality of Life

How to Improve Your Medically Fragile Child’s Quality of Life November 18, 2017

I’m raising a child that has an abnormal brain, and I am neither a neurologist or neuroscientist. My lack of understanding of the brain function has made it challenging to find the right doctors to help him. More than a few times I have been online in the evening reading up on the brain, the parts of the brain, and how the brain delivers information to the body. I’ve had to become an “unofficial” expert in his symptoms and how we can treat the issues. The research grew critical when I was witnessing a decline in his health that I could not understand, and I couldn’t get doctors to pinpoint what was causing them. We went from doctor to doctor, and along the way, I would pick up small nuggets about what could be the reason for his decline. Every doctor seemed to have a theory, but there was never an opinion given to me that made complete sense to me.

Over the course of several months, I began to realize that we needed to find a single doctor that could look at our son’s care from a global perspective. We needed one person to take a look at every aspect of his life, his symptoms, and help us identify the cause and find a way to treat the pain.

Caring for Children Who Have Severe Neurological Impairment: A Life with Grace (A Johns Hopkins Press Health Book)

Supporting the Child and the Family in Paediatric Palliative Care

I looked online and researched doctors that worked in the field we needed for my son. When I stumbled upon the speciality at our local children’s hospital, a huge lump formed in my throat. My son required Palliative Care. I remember vividly seeing the words “Palliative Health” on the screen, and all I could think of was hospice care that is used at the end of life. My stomach dropped as I imagined hiring a team that would be helping our family prepare for my son’s death. For several months, I would go back and forth in my mind on if we needed this care. I would itemize his symptoms, think about our daily cares we gave to him, I tallied up the medications, the appointments and therapy, and I started to get incredibly overwhelmed.

The path we were on with our son was not a healthy place for any of us in the family. His care was taking up all of my time; I had become his nurse, his therapist, his teacher, his advocate, and his pharmacist as I provided him all the care that doctors had instructed me to give him. All of my time was spent managing his g-tube, his medications, his emergent health issues, and bringing him to and from appointments to help him develop and learn. In the scope of five years, I had completely lost my own identity, and my sanity was hanging by a thread. His fragile health was becoming the only focus of our family. My husband and I found our marriage strained due to the lack of time we had together. We had no respite care to give us a break, and I had no immediate neighbours or friends close by going through this same journey. In simple words, my son’s health had utterly broken me.

I contemplated adding a Palliative doctor to our team of doctors, but I was scared that by doing so I was giving up on my son. It was hard for me to admit to myself that I could not do this on my own. My sleep was interrupted, my anxiety was through the roof, and my ability to function as a wife, friend or daughter was limited. In fact, I could barely be a mom because all my time was consumed by his care management.

Perspectives on Palliative Care for Children and Young People: A Global Discourse

Then one day I just knew that I could no longer do this all on my own. I requested one of our specialists to be referred to the Palliative team. I was nervous because I was afraid of what the implications would be to our family, and I was worried our friends and family would assume this was the start of our end of life planning. Our move to Palliative had nothing to do with the end of life for our son, and it had everything to do with how we can help him have a better quality of life and improve his symptoms. Our son is seriously ill, but he can live a long life with proper management. This team could help us meet that goal of giving him the best life possible. We also knew that the team would be able to provide our family social workers, chaplains, and resources to help ease the burden I had been carrying on my shoulders.

Pain in Children: A Practical Guide for Primary Care

The day we officially became patients in the Palliative department was nerve-wracking for me. I drove to the appointment filled with nerves, and I felt like I was going to vomit for a week leading up to the meeting. When I walked into the clinic, I felt weak and unable to speak. I sat down in the office room, and I found myself lost for words and unable to explain why we were there. The doctor came in with a massive smile on his face, sat down with my son, gave him a bunch of toys to play with, and he and I began to talk.

Very quickly I realized that Palliative was not about giving up on my son, but it was a way actually to give up some of my control. By adding this group, I would allow them to help in making choices for my child, will enable them to take care of pain management, and allow them to advocate for his longterm health. The doctor told me I no longer had to manage this load on my own, and his team would be with us every step of the way. I was permitted just to be his mom, and he told me that no parent should ever be expected to navigate the complex care of a child like my son. Within 20 minutes, he was able to identify the cause of his symptoms and was able to prescribe medication to reduce pain and improve nervous system function. He set us up with a social worker, told me he would work to get my son a nurse to help me care for him at home, and that I should no longer feel the burden to do this all on my own.

I could have cried. I didn’t cry because I was honestly too exhausted. That single meeting changed my entire mindset, the goals for my family, and will hopefully improve my son’s long-term health. I realized that despite the fact that I wanted to do it all – I just cannot do it all for my son. He’s seriously sick, and his health requires help to manage on a day to day basis. I cannot be a good mother if all of my time is focused on his treatments, medications, and maintaining his health. If you are in a place where you weighted down by a severe diagnosis of a loved one, know there are options to help with care management.

Palliative is not the end of life care. Palliative care is to help families and patients find a better equilibrium while they manage a serious illness. For some families, it will lead to hospice care, and for other families, it will be an integral part of the team that advocates, manages pain and symptoms, and provides resources and respite to caregivers. We might be superhero mothers – but we do not possess superhero strength, and sometimes you have to ask for help. Don’t wait as long as I did because the name of the speciality scares you. Adding resources and giving some of the burdens to others is the most loving thing you can do as a parent.

 

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