After a turbulent several days and much discussion with the team of people caring for Sutton, we have come to the conclusion that he is requiring far too much care to be suitable for transferring to the floor. The idea may be revisited on Monday, but there is significant potential that he may stay in the PICU until discharge. This is not common practice, but sometimes kids with more complex cases (and his is far from normal) do this.
His respiratory status has not improved much since last weekends roller coaster of events. Please don't mistake me, he is stable. However, his vital signs frequently sit just at the edge of normal and he requires frequent, sometimes every 15 minutes, suctioning around the clock.
He is also still having difficulty tolerating the tube feeds. He made it up to a whopping 1/3 of his goal feed and started vomiting again last night. He doesn't seem bothered by it, but there is still significant concern for aspiration. He is back to TPN and lipids as his primary nutrition. While trying to sell the case that I didn't want to send him for another procedure to advance the location of his G button into a G-J and could we try a different formula instead, he began vomiting bile. It's not the formula. It is something in his GI system causing the problem and the pediatric surgeon thinks that this will band aid the issue until Sutton's gut begins to work appropriately again.
To make a very long and tedious story short, I have been back and forth from the hospital to home every day since Wednesday. I wanted to spend some time with Cohen and that has been significantly impacted by different events the past few days. So we agreed this morning that nothing would happen until Monday. We won't revisit the idea of transferring to the floor and he won't have the G-J placed until then either. In the mean time, they are going to try some medications and see if they don't help Sutton's gut work more efficiently. We would greatly appreciate prayers that his body will be responsive to these medications and that, if they are not, the integrity of his surgical site will remain despite the advancement of his G button into a G-J. Where the G-J would drop off internally would be very close to the site they harvested from his small intestine to repair his esophagus and it is not ideal to be putting additional pressure there this soon after surgery. However, we are confident in the discretion of his medical team and the pediatric surgeon feels comfortable taking this step Monday if we need to.
Kedric and I will head back to the hospital bright and early tomorrow to spend the weekend with an increasingly spirited and cheerful boy. We thank God that these issues we can't seem to resolve are relatively minor at this point. And we are thankful that, despite his otherwise improving status, the PICU team wants to keep him with them at this time. We have been with them for four weeks now and have built a good working relationship with the nurses, techs, respiratory therapists, physicians, nurse practitioners, etc. I feel more at ease leaving Sutton in their care when I would like to come home and spend time with Cohen because of this.
Please continue to pray for our discernment as we make decisions in uncharted territory and for Sutton's health status to continue to improve. We can go home with things as they are now, but we would require a lot of help to do that. We will not be returning to our previous norm for some time. Physicians are trying to give him some time to see if any of these problems may resolve before discharge for his safety once he returns home.
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