Well it was a bit hit or miss if we would make it to our first clinic day. Having created a schedule we have worked out that not having a fleet of nurses at the push of a button is actually a lot of hard work! Our schedule means that we have to be doing something for Levi every two hours at a minimum, and that is not even including the fluids that we gravity feed down his nasal gastric tube, nappy changes or food!!
Levi was on top of the moon having free reign of the flat and made the most of wearing a path between his toy mat at the front of the unit and the prime position of the back window to watch the emergency vehicles wizz past. Seeing him running around, we had to remind ourselves that he had recently undergone a chemo treatment and actually had a bone marrow transplant as it certainly wasn’t apparent with his increased energy levels. However it was short lived and the afternoon was made up with a 3 hour nap which gave mum and dad some well deserved respite. His German donor graft is becoming more prominent as the days carry on, there is an efficiency to the little guy that we have never seen and he has acquired a new ability to be very authoritarian around the house. We are not sure if this is to do with the German graft or the fact that he is a 2 year old and has hit that milestone in his growth.
By the time our Tuesday came to a conclusion we had managed to get Levi and Jude into somewhat of a routine, which made a huge difference with Levi’s appetite as he was more likely to eat the food that we placed in front of him when we were eating the same food. In addition, bedtime had moved from a very uncomfortable 9:30-10:30pm with various interruptions from nurses on the ward, we had managed to get both boys down by 8:30pm. This meant that we were able to take the opportunity to watch a movie which was not very successful as we both fell asleep on the couch.
Wednesday was our first clinic day and was, a unique experience. As we were now considered out-patients, everything seemed to move a lot slower and it was almost like the left hand was not taking to the right hand. As we sat in the isolation room in the day stay clinic, it was a tough endeavour with Levi not really having the required space to do his normal running around. So it was a tough exercise finding a not so destructive activity as throwing his toy trains around the bed and fortunately, starlight TV had the good sense to broadcast Rio which Levi thoroughly loved, as did I. After 6 hours waiting for blood tests to be returned, it was time to head back to the unit for the evening, however, we were not considered off the hook as we were required to make a commitment to comeback the following morning.