Tuesday, March 1, 2016

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.

10 comments:

Terri said...

Praying that His peace that passes understanding will overwhelm both your hearts as you walk through these difficult days. Love you both!

Judy Bleau said...

Praying for peace and wisdom. Love to you both <3

Mindy said...

Praying for you.

Heidi Peterson said...

Holding you both in my heart before God

Christine said...

Praying for you both <3

Vickie Hampton said...

Praying,praying, praying.
Love and hugs,
Vickie

Susan said...

Praying for you both.

linda zawadzki said...

Oh Tanya. I am speechless. Thank God KK has been given you as her mama. We will continue to lift you both in prayer. I still believe in miracles

Denise Reed said...

Love you both more than words can express! KK you are an AMAZING young lady, who has been through more than many & continues to show such maturity & faith!!! Please know that you are deep in my prayers!! <3

Bonnie Fiske said...

You both are so close to my heart, and I am amazed at the strength that you have. Please do not hesitate to reach out if there is anything that you need. Sending big hugs to both of you! Bonnie XOXO