And so it begins...

Truth be told I am not sure what to write. This past week was filled with tearful goodbyes from friends and family. We have been blessed and are truly thankful for the generosity of friends, family and complete strangers, not to mention the number of prayer warriors on our side. Yet, even as we have made the transition here to St. Louis it is hard to believe that at 15 Erin has end stage CF. Today we had over 6 hours of hospital appointments, with 7 more tomorrow and again on Thursday. We will be making some minor changes to Erin's plan and one pretty significant one. Up until this point, our goal was to keep/get Erin as healthy as possible for transplant. In some ways, we have been preparing for today, not exactly transplant time, but transplant doctors and a whole new way of looking at things. Today we stopped Erin's IV antibiotic therapy, something she has been on all but 4 days since July. The doctors want to make sure she doesn't build up any kind of immunity to these antibiotics because she may need them down the road, especially after transplant. The downside is that Erin will start to decline visibly (more coughing, more mucus, more pain, less energy, less strength, less appetite). Eventually she will need to go back on IV meds or go into the hospital, but it will only be until things are stable and then we will start the whole process over again. We have been down this road earlier this year and it is not a fun journey. We are forever hopeful, we like her new team here in St. Louis, and will fight every fight, but at a time of year when families gather together ours is being pulled apart, hopefully not for too long. Today, we also began moving into our Ronald McDonald House apartment and Erin is already finding ways to make it our home away from home. Our new address is 4381 West Pine Blvd, St. Louis, MO. 63108

Comments

  • GeralynHartman

    Holding you up in prayer. Long days ahead for both of you. Stay strong. I am confident the Transplant team knows what they need to do to accomplish the end result...new lungs and a second chance at life. Sending love and hugs, Geralyn Hartman

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