We are in outpatient today. Dr Boklan has begun to schedule out appointments just once a week. Her medications are beginning to be reduced. The HHV6 virus med will go to once a day. It is suppressing her bone marrow, so she is not able to get her white blood cell count up for immunity. Hopefully this will help, and not let the virus take over and become a bigger problem. They are taking her off one heart med. We will just watch her blood pressure closely this week. Her night hydration down to 1000 ml instead of 1800 ml. If Jesse continues to drink, the following week she will have no hydration at night. If she remains hydrated through the day, the following week her Broviac will come out!!! Jesse has been waiting for this day for a very long time. She will be able to swim, shower and take a bath. If she needs any IV blood or other med, they will do an arm IV. Most importantly, it is still looking good for her Make a Wish vacation to Hawaii in October. Her anti fungal med will go back to pill form, eliminating the last IV med.
Jesse still has nausea problems in the morning, and we found out today, that the hospital cafeteria causes nausea and anxiety. Appetite remains a struggle, but it seems to be mind over matter. We are excited with Jesse's progress, and it seems she is getting some of her spunk back. Please continue to pray for a complete recovery and a huge appetite.
Much Love, Team Catron