From Mark's room we are waiting for him to wake up from his Mesinteric Angio-Scope which inserts a scope in the goin area and looks at the arterial blood supply in the upper GI area and determines if there is interruption of blood to the intestine (Bad) or flow to the tissue (Good). He has "normal flow" and no noted abnormalities.
The GI team is not quite ready to call a diagnosis but they are looking at, "Mesenteric Sclerosis" which is something seldom found in juveniles but far more often a condition found in older people, say in their sixties. Treatment would usually combine steroidal therapy combined with Methotrexate which is a chemo drug interestingly, used in breast cancer treatments. Mark does not have cancer but this drug, used in small doses has become a preferred drug for these issues.
Again I say, the doctors aren't quite ready to call this but, they are leaning toward the treatment protocol. This would mean that Mark is going to be on a long-term steroidal therapy maybe for many months, even after he leaves the hospital. These would be aministered at home with injections.
Mark has to keep his right leg motionless for several hours to avoid blowing out the scope suture so that as much as anything, is making him a little agitated but he seems to understand his part in the process.
The challenge in the short term will be to get the feeds working and the talk now is that they may need to pull the N tube and put an NJ which feeds the colon in a normal fashion. Mark cannot leave the hospital until he is able to process solid food without the tubes so this is going to become a big priority in the coming week.
Tomorrow the pallative care team will meet with parents and discuss issues of a social-emotional nature for Mark's recovery process. We welcome the help the PCMC teams give and truly appreciate the overall approach to health care here.
Mark soldiers on and he could teach the class on coping better than most adults. He is a real fine young man and not a day goes by that the family does not feel blessed to be his family.
Ken
