SATURDAY 19th NOVEMBER:
After days of being stuck in room on her own, Joni-Mai was fed up - and rightly so. Daddy was fed up because things weren't being done as they should have been, the medical staff (MINUS A FEW EXCEPTIONS!!!) on Tropical Lagoon were not following protocol and kept fobbing us off with poor excuses for not doing things as they should have been done. Joni-Mai needed her dressing changed on Tuesday and it still hadn't been done on Saturday - leaving her vulnerable to infection developing on her PICC line (which goes straight to her heart...). Daddy got hard and told them it HAD to be done, and thankfully, someone changed the dressing. It was annoying but it isn't a CLIC unit and so, they aren't used to the discipline that is needed while dealing with an oncology patient. There were a few exceptions to the rule, a kind student nurse - Simon - was very good with Joni-Mai, taking obs on cue. A really nice oriental male nurse who was very gentle with Joni-Mai and gave her the G-CSF slower than anyone and in more of a friendly manner than anyone else ever had. Joni-Mai spent a lot of time with the teacher Jan and Viv the play specialist. They helped her through what would have been a boring time had they not been there!
Today, we were expecting Joni-Mai to be allowed home, her blood cultures had been with the pathology labs for over 48 hours, more like 54 hours. Daddy kept asking where the results were and no one could answer the question. It wasn't until the late afternoon when someone told him Joni-Mai couldn't leave until she had her blood culture results but that could take some time and mean an extra night in hospital because the Pathology Lab's computers were down.
Joni-Mai ended up staying another night in hospital because of a computer fault.
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