Sorry folks, I didn’t get this updated last night.

Zachary had a not so good day. They did give him a blood transfusion as his hemoglobin was very low. Within a few hours he was pretty perky again and kicking away. However, somehow he managed to kick one of his tubes and pull the stint loose. It only came out a couple of centimeters, but that was enough to get the urine flowing into the foley and not all into the stint. There is only a 1-2% chance of this happening, but Zach managed to be unlucky enough to fall in that category! They have now taped the tube to his leg and taped his pj bottoms, etc.

This morning (Sat) he has come down with a rash and fever, haven’t heard what is causing that and the stint has come out a couple more centimeters. They are running a bunch of test this am to see what there next steps will be.

They’re lives seem to continue on this up – down cycle that it has been going on for the last year. Talk about stress, they have really had it and we are so proud of them for their endurance. Without Stacey there 24/7 to be his advocate, he would not be doing as well as he is.

When I hear results of what is happening, I will update.

Thanks again for the the caring and prayers.

Gma E