Tonight all that has changed. Nurse Ashley noticed that Max was a little warm, which is fairly normal for him these days. So, she stripped him down to his diaper and cuddled him for a while, or at least tried to. Max was inconsolable. She said she has never seen him like that before. Over the next couple minutes she had to turn his oxygen from 32% to 65%. A significant jump. She also took his temp. which was 40 (104). NOT GOOD.
The increase in oxygen takes away the opportunity to order a home vent. Mark and I feel...well...I don't know how to feel anymore. Every time anything good happens with Max something comes along and crushes it. One step forward--ten steps back.
Please pray for Mark and I. We just want our family together. Our boys have gone through soooooo much. It is becoming harder and harder to deal with these set backs. Sometimes I think we are going to celebrate their first birthday in the NICU. I am...out of words. After seeing all the people today at my Grandma's visitation and telling them how great things were........ I told them I saw a light at the end of the tunnel. The light is gone.
I just want my son home. I just want my son home.
I know God has a plan for my family. I trust that my son will come home one day. I have faith that the 4 of us will all be together. I believe in a God that heals---Heals my sons lungs and my tattered heart. I know these things to be true, and yet I struggle with it all.
Thank you for your continuous prayers and support over the last +/- 9 months. Our family has been so blessed by it. Thank you for showing me just how truly amazing the family of God is.
With much Love and Thanks,