After 4 days of tweaking medications and fluid intake, Levi’s team were happy that they had got his levels to a stage they were sure he could be managed off the ward. Though just to be on the safe side they gave us another 24 hours as an inpatient just to put it into practice and demonstrate his levels could be managed without IV assistance.
With a successful day passing and a new addition to Levi’s medicine list, we were sent on our way.
As today was suppose to be our clinic day, we thought that tomorrow would be a day off as the original plan was to only go to clinic Monday, Wednesday and Friday. Though we were told that they needed us to come back to the ward for a ‘quick blood test’. After Saturdays admission we are a little skeptical at what tomorrow holds. Though this blood test has nothing to do with Levi’s levels, this is the “official” test (GHR) which tells us that he is still CGD free and one that they will repeat regularly.