Nicky
Nicky, mother of Janessa (age), Isaiah (13) and Avery (9). Isaiah and Avery have mitochondrial disease.
Spinal Fusion Surgery: The most difficult decision I've have to make
The mom of two sons with mitochondrial disease talks about how she and her husband considered all the variables that went into their decision to ultimately forego spinal surgery for their son. It was all about quality of life. “I still don’t feel totally at peace with this because I have a visual reminder every day that I decided not to do this. But I know I made the best decision for him because I do not want him living in the hospital because of a surgery that he may or may not survive and that he will need to keep getting.”
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I try to prepare but there’s just not going to be any preparation.
Spinal Fusion Surgery: The most difficult decision I've have to make
It was like this little secret society.
Palliative Care Focuses on All the Living
We’re normal people and we experience normal things.
I had to learn to live in the moment and not look at the future.
I’m feeling trapped. But we’re getting closer to that future.
I saw a counselor.
I’ve learned to take the breaks I need.
It’s not fair and I’m at that point where I’m not sure I believe.
Medical Orders/MOLST: Making the Decision Together
I will have peace knowing I’ve done everything as his mom.
I want providers to know that there needs to be some flexibility.
Medical Orders/MOLST: It was very emotional for me.
Always hoping we can make it a little bit better.
In our model we fall in love with your kids, and are a continuity factor.
Tracheostomy for my son?
Spinal surgery for my son? The most difficult decision I’ve had to make.
Isaiah’s illness almost got us divorced.
I always want parents to know they have a choice
Decision-Making, Palliative Care: Please remind me what’s best for him.
Decision-Making, Interventions, Palliative Care: How you balance hope in the reality.
Something always comes up. You do it again and again and again.
Now they say, “Whatever you say, Mom.”