Monday
We came in early for a general checkup and get his Gancyclovir. We were then told that (because we had just come out of transplant) Doc Tiedemann wanted to see us personally so we had to sit around and wait until the end of her list. All is well, though some of the test results which she wanted were not there. She chased them up but then she said that due to some confusion we were discharged earlier than she would have liked, so we have to come into the hospital everyday this week for the Gancyclovir, and this will continue until we have a couple of negative cultures for HHV6! Jake gets blood tests twice a week so they can be tested.
Although it's inconvenient to come in every day, I like it way better this way than being admitted because I can see Kai everyday and we get to sleep in our own room.
Thursday
We came in at 8am so that the bloods could be done by the time we saw the doc at 9am. Unfortunately his cultures are still positive so nothing changes.
I spoke to the nutritionist because he is eating so much, and she said that the steroids were increasing his appetite and that this is normal. Jake now has a pot belly and chubby cheeks. She also told me that when he is weaned off the steroids his weight will reduce and sometimes the kids stop eating altogether. They bulk up before the not-eating stage.
Friday
We came in expecting a quick in-and-out but the nurses were busy and things just happened to prevent smooth sailing. They usually push a flush through the line after the medicine to make sure that all of it goes into Jake's blood. Today we buzzed to inform them that we were ready for the flush, and a nurse came in and turned off the buzzer and told us she was going to get one of the day oncology nurses. We waited and no-one came. Eventually someone else came in and saw that we had finished, so she silenced the buzzer and walked away. We waited. I went and asked and the lady at reception, and was told that there were heaps of people waiting, so I went back to our room.
TWO hours later I turned the buzzer on again and they finally came to put the flush up. We got comfy, and we are used to things stretching out more than usual, so we did not complain. I told them and she said that they had no idea. We had been forgotten, and they apologised as we walked out.
Sunday
Today was awesome. Parking was free, and I got one outside on the main road close to the entrance. We came in and they hooked Jake up and the nurse was waiting for our buzzer to go. She even preempted it and had everything in the room ready. We were in and out within an hour!