Macy is headed home this afternoon after her last dose of IV antibiotics! We are thrilled to get to our own beds, see the boys (the dogs and Daddy and Max), and eat a home cooked meal! 

The clot in Macy’s neck is unfortunately still present, although it is a little bit smaller. She has transitioned to Lovenox injections and will stay on a therapeutic dose of those for the next 6 to 12 weeks. Many labs have been drawn to determine if there was another cause for the blood clot other than the perfect storm of the port, infection and kidney disease. Until we have more answers and the clot resolves, we are going to try and limp along without a port. Please pray that Macy’s veins hold up for the frequent lab draws that will be required to ensure her clotting factors are within range. All her metabolic lab numbers and antirejectoin medication levels have also been a bit off, so we will be following those closely as well.

Next steps are to follow up with Urology at Children’s very soon to address the frequent infections. We will also likely be checking urine cultures weekly to be sure and catch any new infections quickly since she doesn’t like to show symptoms until the infection reaches her blood. 

We are really feeling quite fortunate that we “accidentally” found the last UTI and “accidentally” found the blood clot while searching for other things. God sure has Macy in his hands!