October 10, 2006

Zachary has been on and off of antibiotics for the past couple of weeks. His cultures have come back negative for now.

We are still waiting for results of the genetic testing that was sent a couple of weeks ago. We hope to have them soon.

The abdominal CT scan that was done several days ago gave us some insight as to why he is having digestive problems. As they increase the volume of his feeds his intestines expand causing the intestine in his inguinal hernia to pinch and create a "pseudo blockage" as the doctors refer to it. The blockage causes his feeds to back-up which creates a number of problems. His hernias decend more creating more back-up as well as the risk for incarceration. The added pressure also compromises his lungs even more. At this point it appears that full feeds are not an option for Zach because he can't tolerate the appropriate volume. Unfortunately the doctors don't believe that he would tolerate another hernia repair because the added pressure of putting the intestines back into his abdominal cavity would be too much for his lungs. They are trying to find a balance of TPN (IV feed) and formula to minimize the adverse affect of TPN on his liver. As in many aspects of Zach's care we are "walking the edge of a knife" trying to make the wisest choices we can.

A new concern that Zach is facing is that his stomach started protruding through his G-tube stoma (the opening thorough which his g-tube is inserted). The doctors decided to remove the g-tube and allow the stoma to close enough that his stomach would move back into the abdominal cavity at which time they would re-insert the g-tube. When they took the tube out they had to insert another tube into each nostril. One to feed him into his intestines and the other to relieve pressure from his stomach. In the mean time his g-tube stoma did not start to heal the way the doctors wanted it to on its own. After much discussion they decided to sedate Zach and reduce his feeds to 5cc/hour for several days to see if his stomach would fall back into the abdominal cavity. The hope is that if he's completely relaxed and his abdominal pressure is kept to a minimum it will close enough to avoid another surgical procedure. The surgeon did put a suture in at his bedside to encourage closure. We will see what happens over the next several days.

We will update with results from his genetic testing as well as how he does as he wakes up in the next several days. Thank you for your patience with our updates. Our lives are busy as we try to balance life at home with Hailey & Clayton and our life at the hospital. We know you are all busy as well and appreciate your continued concern for our family.