October 24, 2006

As many of you know the past several days have been very hard for our family. We had a meeting with several of Zachary's doctors on October 13th to discuss his long term prognosis. At that time the doctors communicated that they don't believe Zach will ever be well enough to come home. Their observation has been that the therapies used to sustain Zach's life are keeping him alive but ultimately they are damaging his body systems. For example Zachary requires a very high level of support on the ventilator. This is necessary to properly ventilate him however, the high pressures are damaging new lung tissue that is growing which prevents weaning him from the ventilator. Also, because he cannot tolerate full feeds he is still getting large amounts of TPN (IV feeding) which nourishes his body but over time damages his liver. There are a several other issues that seem to become more and more challenging over time such as his hernias, his g-tube site, weaning from sedation and pain medication, etc. Because his doctors think his body is behind the healing curve and will never get ahead they have asked us to make a decision on Zach's care that we never wanted to make. In their medical opinion the best decision for him is to remove artificial support and let him go. This is hard news to communicate. We all love Zachary so much and have been touched by his incredible spirit. It's hard to imagine not going to the hospital to visit and encourage him everyday. We have prayed long and hard and will continue to do so as we try to discern God's will for Zach. We thank all of you for your prayers on our behalf. We know it's hard for you to wait and wonder as I'm sure you can understand what a difficult position we find ourselves in. Meanwhile we are enjoying Zach as much as possible. We had a photographer come into the PICU on Monday night for some family photos, we plan to take Zach outside for the first time on Friday, and he continues to pull in crowds of family and friends to spend a few moments with such an amazing little guy. We are honored to be his parents.