Destiny’s mother describes how she was very hesitant at first about the Pediatric Palliative Care Team. But once they became a part of her daughter’s care team, they not only alleviated her daughter’s pain and suffering, but hers as well.
Transcript:
On June 22, 2011 my daughter Destiny, was admitted to the Pediatric Intensive Care Unit for a urinary tract infection. At the time, Destiny was 10 years old with a complicated medical history that consists of two balanced chromosomes, 4p- and trisomy 10. She spent 82 days in the intensive care unit. On July 7th Destiny was diagnosed with Disseminated intravascular coagulation, which means she was at the end of her life. She went into sepsis shock, needing a few bags of red blood cells and fresh frozen plasma to clot her and stop her from bleeding out. On July 16th Destiny had a tracheotomy placed, which is a surgical hole that goes through the front of your neck and into your trachea or windpipe. The hole is made to help her breathe. During this time I was a student at Springfield College, working part time and raising my other two teenagers and keeping them busy. The only person that I could open my heart to was Karen Cassidy from the Thom Western Regional Consult Program.
Karen and I talked, texted and she stopped by the hospital frequently for the 82 days that my daughter was admitted. There wasn’t a day that Karen wouldn’t talk to me about the Palliative Care Program. I refused to listen. I thought everyone was against me because the team at the intensive care unit was not in agreement with my decision to keep my daughter a full code. With Karen’s promise that Melanie from the Palliative Care Program was not like everyone else and would be a great person to put on my team, I finally decided to talk to Melanie. I remember the first time Melanie and I met that was in my living room. Destiny was on her mat on the floor, smiling. I was quiet and nervous. I did not know if she was going to be like everyone else because she is a nurse or if she was going to have empathy for me. I asked her tell me about her program and she said, “Palliative Care - alleviates pain and suffering - and it can also extend life, but it does not cure the illness.”
The term 'palliative care' refers to pain control and symptom management and other comfort measures given to the patient. It is given by medical, nursing and other staff with special skills to ensure to improve quality of life for both patients and their families.” I was informed that my daughter was going through withdrawal from all of the narcotics she had while she was in the hospital. No one was able to help me with a steady dose until Melanie stepped in and said, “this is my job, I will get back to you before the end of the day.” She called me and gave me the revised dosage. I cannot express how happy I was to have given Palliative Care and Melanie a chance to be on my team. I can sleep better, I don’t worry as much and I have less anxiety to know that Palliative Care is available to answer any questions that I have and are very involved in my daughter’s care. It is not easy being a parent of a complex child but with the help of Palliative Care, Melanie, it alleviates the stress.