Today is Jesse's weekly outpatient visit. At first, Dr. Boklan was excited with Jesse's progress with drinking and not needing all the extra meds. After the blood work came back, she was not so excited. Jesse's ANC has dropped to 595. This she thinks is because of the med they are using to fight the HHV6 virus. Her platelets are also down to just 10. This next week they are stopping the HHV6 med completely. Their hope is that she will start making bone marrow again, and be able to fight the virus on her own. Tomorrow we will come back in for blood and platelets.
Hawaii for October is not going to happen, there are just to many unknowns with Jesse's chemistry.
On a good note, Jesse is off the night hydration bag for this week. They are letting her hydrate herself by drinking over 100 oz of liquid everyday. They are also changing the last IV med to pill form. So, for now this is the first time since OCT 17th, that Jesse will not have to be hooked up at anytime during the day for meds.
Jesse's weight continues to be a problem. She really tried this last week to eat, she was getting about 1700 calories a day. This is not enough, she lost another 2 lbs, she is down to 121lbs. We are going to try some weight gain drinks twice a day along with the normal food she is eating.
Jesse has come such a long way, I hate to see her going backwards at this point. Even though her counts are low, she is feeling great and enjoying being home.
Much Love, Team Catron