In true Isaac style, despite coughing and spluttering throughout clinic, and giving them a deliciously juicy sputum sample for the lab, when they asked him how he felt, he just replied ‘Alright I suppose. Yeah, fine’. He usually has cold spray (numbs the skin) to access his port, but for the needle today he chose to have nothing, and hardly flinched. If he could have carried on watching you tube he would have. He amazes me daily.
But the wards are full. There is no room at the inn.... HA! This shouldn’t please us, but it does. We can stay home and I’ll do his IVs here, and this makes us very very happy. They would rather have us in, for the physios to put him through his paces, but we can and will do just as much here (and avoid picking up more bugs on the ward). Administering his drugs myself is tiring (I’ll be up at 5am, to glove up and mix drugs) but for Ise, it means he can sleep through the doses while I creep around his bedroom in my plastic apron. I cannot fully explain to you how much less exhausting, frustrating and life intrusive this is for us than being on the ward.
Best case, we do two weeks of IVs at home. His lung function improves, and most importantly, he starts to feel better. Then ho ho ho we can hope for a wonderful and well Christmas. However, if he doesn’t improve pretty quickly, feels any worse, or his labs show he is growing something other than his norm (PseudoA) he is guaranteed an emergency bed as that would mean drugs or treatment that we cannot give him at home. He really really doesn’t want to go in, especially so close to Christmas. Please let this work x
