Hard Conversations

When KK had her first seizures two weeks ago, her pediatrician, Dr. Hunt, visited us in the ER. She pulled me aside and asked me to think about signing DNR papers. So I wasn't surprised when I was asked to consider signing them when I met with the nurse practitioner at Dana Farber last week. I signed the DNR papers.

When KK had her second set of seizures the very next day, one of the doctors at UMass tried to delicately broach the subject. He was a bit awkward about it so I interrupted and told him I had DNR papers...I also told him I wasn't ready to give them to him yet.

At Dana Farber, I was also asked to consider whether I wanted KK to die at home or at the hospital. I wasn't prepared for that question and said that I needed to think about it. Just an hour later on our way to New Hampshire, KK (who had not been privy to the conversation at Dana Farber) brought up the subject on her own. She stated that she wants to die at home if at all possible.

KK and I met with a social worker from Notre Dame Pedi Pals (Pediatric Palliative Care) on Monday. We will meet with the nurse from Notre Dame Pedi Pals on Thursday afternoon. I didn't realize that they offered so much more than "end of life" care.