Day 21- Real Answers

Monday August 1
Monday 8am was our meeting with Corinne’s new neonatologist doctor at Washington Regional to discuss Corinne’s condition and what our options were. I was sick to my stomach… I felt that answers would be coming soon. I was ready to say what I thought! Which up to this point I never spoke to the doctors I just sat, listened, and wrote notes. (I Emily Brewer Wegner-Moll did not ask questions…that is rare if you know me!) But over the weekend it became very clear to me Corinne was dying and there was nothing a doctor could do, it was time for her Mother to care for her.
In our meeting Dr L. asked us to explain in our words what Corinne’s medical condition was. I told her that Corinne had a rare peroxisome disorder called Zellwegers, she had 2 holes in her heart that due to her health and medical condition she was not strong enough for a surgery, nor was one ever an option in our minds, Corinne’s brain did not form fully and coupled with that and her Zellwegers her body would start to shut down and she would not successfully breath on her own. I am assuming the doctor asked us this so she knew that we “got it”.
We then in turn asked what she thought Corinne’s life expectancy/quality would be and for the first time we didn’t get “you can never predict” we got a real answer, a real answer!!!!!!! We feel in love with Dr L because of this!!!......She explained Corinne did have a staff infection due to the ventilator tube that ran down her throat building up with bacteria. Because of the staff infection Corinne was having respiratory distress and more fluid was building up in her lungs. She said that we would put her on an antibiotic and we should see improvements in 2-4 days. Beyond that she said there was no more medical treatment to give Corinne. She told us that C being on a ventilator wasn’t a help to her, it would never help her breathe better on her own one day and that a longer a child is on a ventilator the more susceptible they become to an infection and phenomena.
I then I said it, the hardest thing I have EVER said.. We are ready to let Corinne go.
We all agreed that we would start Corinne on an antibiotic for a few days and then we would wean her from her ventilator for a few days. We asked Dr L how long she felt Corinne could successfully breathe on her own. She said based off of her medical conditions, brain deformities, and her history of successfully breathing on her own that she felt she would live for 30mins-48hours.
Ryan and I spoke privately for a little while and then I went and told Dr L that we were ready to take her ventilator out on Monday August 8th unless we saw significant medical change.