After 10 days in Intensive Care, the doctors have finally used our favorite phrase “turned the corner,” letting us breathe a huge sigh of relief that it’s when and not if we will be bringing Casey home. Her lungs have continued to recover slowly, and even her platelets have rebounded a bit. The respiratory team is starting to slowly wean her ventilator settings so she can be extubated hopefully within the next week.
We are starting to turn our attention to surgical options to better address Casey’s reflux. Most likely she will need to have her fundoplication tightened, and another tube inserted downstream from her stomach into her small intestine. This will allow us to feed larger amounts of food directly into her small intestine without risk of pneumonia from reflux/aspiration. This is typically called a j-tube, whereas currently she has a g-tube. The g-tube would still stay in place for some medicine and for gastric venting to relieve gas pressure. The j-tube care may be harder, but it will be worth it.
In order to have these types of procedures, Casey will need to have a number of GI tests after she is stable enough from her pneumonia, possibly as early as next week. With surgery and a difficult recovery after that, you can see that she will be in the hospital for quite some time.
It was one year ago today that we finally brought Casey home from UCLA Medical Center after being in the NICU for almost 2 months. We are so blessed that she is with us today and has so many people that care for her.