Emerson 10/1/17 death rattle, post fentanyl overdose (brain tumor, sepsis, hospice, chemotherapy)

To view Emerson’s story in entirety, visit www.facebook.com/emersoncrane830 or search #lovelikeEmerson

This is a video of my son, age 10, who had been given a fentanyl patch by hospice. Our nurse instructed us to cut the patches in half to deliver half the dose of fentanyl to him, however it had the opposite effect, and all of the fentanyl was being delivered in one large dose. Even though Emerson was already on hospice, he was also on chemotherapy that we were hoping would reduce his tumor size and save his life. One cut patch was put on on 9/29, the next day he had a shower and the patch came off and we applied another cut patch to be sure he didn’t miss his medication. Essentially he received a whole patch worth of medication in the span of a few hours. His hands turned blue, he was struggling to breathe. Because he was so obviously suffering, we took him to our local children’s hospital after this video was made. They gave him Narcan, he came out of the overdose, but he developed a high fever. They weren’t sure whether the fever was related to his chemotherapy or if he had contracted a pathogen, so due to their indecisive answer about the cause of the fever, we requested he be transferred to the hospital where his neuro-oncologist and neurosurgeon were located. During the 30 minute flight, despite my and my husband’s request to not give him any more fentanyl, the flight nurses gave him another dose intravenously because he became agitated in the flight (we later learned his other IV had infiltrated and was likely the cause of his discomfort). Emerson went into respiratory distress after the next round of fentanyl/Narcan and his heart rate went into tachycardia (around 200BPM) during that flight and he never recovered. After a day of trying to bring his heart rate and respiration rate down, he died in mine and my husband’s arms the next day at 9pm.

In the end, the official cause of death was listed at sepsis, with complications from a pilocytic astrocytoma and DIC (disseminated intravascular coagulation), though I feel the fentanyl played a part due to the fact that he never came out of respiratory distress following the last administration of it. Having a tumor and being on chemotherapy is hard, add in sepsis, and then top it with an overdose and he had no chance of recovery it seems. The overdose, however was just one of the things that I wish we could have changed for him. Ultimately his death couldn’t have been prevented, but he definitely suffered from this overdose, and had he not had to go through it, he could have died at home peacefully as we had hoped.

We’ve been asked why we have shared this. We have shared all parts of our son’s story, including the hardest parts. These are things that most people never have to see, thank God they don’t have to see it happen to their own child. When our son was suffering from this condition — which he recovered from as he came out of overdose — we wanted to know what “the death rattle” sounded like so we could prepare if this really was the end for him or not. We searched youtube for examples, but there were few. I sat with him and vacuumed his throat from the fluid that was continually building while his CNS was impaired. After this stopped, we still had the video that we made to show to his doctor. We added a lot of his videos to a list about his life, I had no idea this video would ever be watched over 5000 times. You choose to watch or not. Dying is a part of living, this is just one of those parts.

We have had many people message us since they have watched this video, some saying their faith has been strengthened because they were led to his other videos, and some said they were using fentanyl and this video makes them want to not use it. Every time I think about making this video private, I think of those people and how out of such bad could come some good, and I leave it another day. I hope that Emerson’s and our suffering can be used for good for someone. Emerson has always had a way with pointing people to Jesus. He was adamant that Jesus came to him before his death, and it’s for that reason solely that we have shared every part of his journey from life to death.

Childhood cancer is ugly, funding is limited, and it’s an under-served population. We hope this video serves to be educative, preventative, and maybe someone will link to his Facebook page and see the love that he had, the love that God blessed his soul and spirit with, and they will come to see the light in this world of darkness.

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