Here ‘s an update on my little man, Noah Swanson. I’m happy to report he was discharged last week from PCH. His BK virus and C-Diff reappeared which may have been the cause for his fever. His kidney are really stressed. His creatinine levels have been really high for him. The poor kid has been on 24 hour fluids for weeks now. We are hoping that his levels don’t continue to increase or he will need to have another ultrasound to see what is going on. Dr. Adams informed us today he may need to go see the kidney doctors again if his levels continue to be elevated next week.
I finally got to meet with Dr. Su regarding the Photopheresis Therapy (ECG) for his GvHD. There is still no set date for it to begin, possibly sometime in May. PCH has ordered the machines, hired the staff from Mayo and they are working on where to put it in the hospital. Noah will be the first patient at PCH to be treated with this new therapy. Because of his age & size he will start off twice a week for 2 hours for the first 8 weeks. He said treatment can last 6 months to 2 years depending on the patient. Currently, all the autoimmune suppressant medicine his helping his skin. It is a temporary fix but for the moment it is working. Noah will go back to dermatology next week. Noah has currently been seeing a psychologist to do play therapy to help him cope with all the stressor of having health issues. That has seemed to help. Noah will start occupational therapy next week to help him with some fine motor skills in his hands. Because of the GvHD there is a concern that his skin will tighten around his joint and he could end up with his hands curling into a claw formation.more >