Submitted by Marcia Jacobs
Angel Anjuli's mommy
11/24/96 - 6/22/01 - GBM4 brainstem
What would you have liked to tell the residents that cared for your child?
I would tell them that we appreciated their care and that we think overall that they did a good job under very challenging and exhausting circumstances. But I would also tell them to be more careful. A mistake made with a terminally ill child could be that child's very last mistake......you know what I mean? A mistake they make with such a fragile child could easily kill them. Or, it could ruin one of the child's last days. And then the family is haunted for life.
For example, on Anjuli's very last Christmas Eve we brought her to the ER after she had vomited all morning and part of the afternoon. She had vomited almost 100 times. Once in the ER, the resident (and I will never, ever forget his name) overdosed Anjuli with 15 mg of dexamethazone instead of 1.5 mg of it. This was IV. Anjuli reacted extremely strongly to any dose over 9 mg and Children's knew this---it was in her chart. She had to be admitted and 4 hours later Anjuli went into the biggest phychosis-induced rage any of the floor nurses, or the ER Attending (who came up to the floor to help when she got a call from the floor charge nurse) had ever seen. It took several large doses of IV benadryl to knock her out. That is how she spent her last Christmas Eve. She died six months later.
Here's another example. Anjuli developed a yeast rash on her neck shortly after her shunt surgery (she could no longer hold her head up). As a brain stem glioma patient and a cancer patient on chemo and shortly after radiation, Anjuli was at extreme risk for pneumonia. Yet a resident prescribed an anti-fungal powder for her rash. I used it and was so careful to protect her eyes when applying it. But I did not know to protect her nose and mouth. She breathed the powder in and it caused, after a few days, inhalation pneumonia, which she then suffered for the last 4 months of her life. She required oxygen 24/7 after that and never got off of it. So, as you can see, these two residents had a huge, huge impact on my daughter’s life. And on mine. And there is nothing anyone can do to undo these mistakes.
What do residents need to understand when a terminally ill child falls under their care?
They need to understand that each day they care for such a child, each hour, in fact, could be that child's last. They need to treat that child they way they would like to be treated if it were their last day, or last hour, to be alive. And they need to honor to the very best of their abilities any wishes the family has for their child. If they want to sleep with the child, make it happen. If they want to give their child one last bath, make it happen. If they want a private room, make it happen. If the child wants one last trip to the playroom, make it happen. If the child wants to eat bacon at midnight, make it happen. If they want to invite family and friends (at the same time) into the PICU, to say goodbye, make it happen.
They need to know that there is nothing, absolutely nothing, more excruciating than watching your child suffer and die. And, like I said before, they need to know that they need to treat that child they way they would like to be treated if it were their last day, or last hour, to be alive.