We are hanging in there. Alex's temp came down to 104. He was having a hard time keeping his O2 Saturations where Dr. Koenig would like them so she wants him on oxygen. The problem is that he will not let me anywhere near him with the nasal cannula. He refuses to put it on. For now we are making due with a tube blowing oxygen towards his face.
The plan is for us to stay until Alex is over the hump. We need him on the mend. He is way too sick to go home like this. Once he is better we will head home with plans to return the last week of January. When we come back Alex will go to surgery to have a J tube placed. This time they will place a separate tube directly into his intestines, so he will have 2 separate buttons. They will also perform a specialized test called an MRCP. It is similar to an MRI, but of the pancreas. Because of the length of the test he needs to be sedated. Dr. Koenig does not want him under anesthesia two times so we will do them together.
We are also running a number of genetic tests that could explain Alex's chronic pancreatitis. I am still awaiting word on whether or not we will do IVIG to try and boost his immune system right now.
Thanks for all the prayers.