New Routines

Our day home yesterday was one filled with new routines interrupted by reminders that this is now the norm. In the hospital Henry was on intravenous medicines managed by the nurses. At home, its all us. Leaving the hospital knowing this was reminiscent of leaving the hospital with our first child - glad to be going home, but nervous about new responsibilities.

We'd had to get four medicines from the pharmacy and once home we received a good sized box of medical supplies and instruction from a home nurse. She taught us how to administer the medicines intravenously through his central line, a catheter into one of his arteries. There is a series of six syringes that must be given in a specific order over the course of 20-25 minutes to be given daily. This medicine is to provide him with a stimulating agent for his bone marrow, that is to say, boost his white blood cell growth and increase his natural immunity. The catheter in his chest allows us to do this easily without pain, but he still gets very aggravated by any attempt to give him 'medicine' in any form.

Henry has a bed in our living room now for lying down during the day. He alternates between that and sitting up in the chair, as well as activities here and there when he finds small bits of energy. He seems to still be experiencing some of the effects of chemotherapy in that he's lethargic, a bit nauseated, and his appetite is all but non-existent. They warned us of this and we know we've only been 48 hours, but its difficult to watch as a parent.

Coming home after his tumor resection was so different. He was playful and interactive, we could be outside and have friends over. I was able to forget about his condition for a while and just rest in the enjoyment of him playing. After the chemotherapy, however less outwardly invasive, he seems to have at least a low level of discomfort most of the time and is tired but doesn't seem to be able to nap easily. That said, he did have a feel-good spell of activity today. He played a board game with Mommy and rode his 'cruckie'. (He's allowed outside with certain restrictions) He ate just a bit of ice cream too. These brought a few smiles to his face and, of course, to ours.