Hospital today. Isaac is stable, but no better after almost two weeks of extra antibiotics and anti-fungals. Side effects of the latter mean his poor lips are cracked again (and I don’t mean dry, chapped lips, but big old welts that bleed). The plan was for bloods, lung function tests, and then kick off IV antibiotics while we wait for the blood results (if the fungas is rampant again, they may consider nebulised and or IV anti fungals as well). But, best laid plans and all that... after three failed attempts to access his port, we have come home, many hours later, with no venous access. Bloody annoying seems an apt phrase. Although frustrated, and in a little pain (the third attempt, they thought they were in, but the flush tissued under his skin, rather than going straight into his blood stream) Isaac was his usual stoic and wonderful self. Despite everything, we laughed on the way home, reminiscing on other medical fails in his history, and how much better things are now, than then (for one, although the port hasn’t helped today, this is the first time we’ve not been able to access it, and yet pre-port days, we had many a failed cannula, PICC or long line issue - funny how we can now laugh about these things, at the time I think we were all traumatised). The hospital was eerily quiet, being closed to visitors and all but emergency outpatient appointments. The wards are anything but quiet, and staff look exhausted. Weirdly, while there, we heard and felt a sonic boom as some fighter jets were scrambled to meet an incoming plane that was had lost comms. I think I am starting to be unshockable this year, amid the politics, pandemic and weird weather. Anyway, for now we’ll complete the extra meds he’s on, and will return on Thursday when his usual CF specialist nurse (and all time wonderful human being, C) is back in, hoping she may have better luck, knowing him and his port well. Portacaths can last anything up to ten years, but as he was 11 when he had this, five years ago now, he’s grown and how this child sized port sits in his chest now might be causing issues (as I understand it). It would be frustrating but understandable if this port were coming to the end of its little life. For now, we’ll keep our fingers crossed that this is a hiccup, not a port issue. It’s been a long day, and not an easy one for Isaac, but I reminded him that this has been the longest stretch between courses of IVs in a couple of years, or more. He smiled, said ‘oh yeah’, and just got on with it. It only cost me two M&S curries and a packet of yum yums.
Today was not a walking day for me, but the group effort and sponsorship is growing. Thank you all so much x
#Stay home, protect the fucking NHS, please.
I’m not allowed to picture him much now, so have some ickle Ise instead ❤️
(PS. Before you report me, I don’t really give him beer)
