Thanks for all the kind words and thoughts. My poor baby has really struggled through this last week and it breaks my heart. Luckily, there is an end in sight. We on scheduled to place a G/J tube on Monday. This is our last shot at a G/J tube. A surgeon will place it and stitch it in place. If it comes out we will have no choice, but to place the separate J tube.
In the meantime, Alex continues to need pain meds for his stomach pain. We did find a regimen last night that allowed him to sleep so that was a blessing.
I will continue to update as we know more.