August 26, 2006

This is one of our favorite pictures of Zach. We love these moments. He is such a precious boy and has endured so much. His smile is priceless.

Zach has had a stable week although unfortunately began yet another round of antibiotics due to an infection found in his trach aspirate. This doesn't appear to be a major infection and hopefully the antibiotics will knock it out quickly.

Zach has recently been busy with many procedures and tests. The radiologists did manage to get his g-tube past his stomach and into his jejunum (http://en.wikipedia.org/wiki/Jejunum). They started his feeds at 5cc/hr. and have increased him to 10cc/hr. continuously. So far he seems to be tolerating it.

He also had a bronchoscopy (http://www.webmd.com/hw/lung_disease/hw200474.asp) to look into his trachea and determine if he had some swelling that may be inhibiting his ventilation. Nothing significant was found. The doctors did determine that he was ready for a bigger trach, so they increased the size which seems to have reduced the amount of air that was leaking back up his trachea and out of his mouth/nose. Zach was switched from one type of hospital ventilator to another and is currently using a different mode of ventilation (volume control rather than pressure). The goal is to find a mode in which they can properly ventilate him with the least amount of support possible. It's a fine balance. He needs the ventilation to survive but too much ventilation can damage the new lung tissue that grows and therefore make him resistant to weaning. One doctor says it's like walking the edge of a knife. We have found that to be true in many aspects of Zachary's care.

Overall we have been very happy with Zach's move to the PICU. We definitely miss his team from the NICU but feel like his care is more appropriate for his size in the Pediatric Unit. We are making some new friends there and Zach has already melted many hearts with his fighting spirt and his sweet smile.

Thanks to everyone for your support and especially for your faith in Zachary. He has certainly changed our lives. We wish you could all experience those precious moments when he smiles and reaches out to hold our hands. He has a long challenging road ahead but we know he benefits from all of your thoughts and prayers.